I would ask that we take a moment to consider the workplace experience of colleagues with autoimmune conditions, which are non-visible.
Our immune systems guard against germs like bacteria and viruses by sending out white blood cells to attack them. Unfortunately, in some cases, the immune system can mistakenly attack healthy cells, including the central nervous system, joints and other organs. This can result in autoimmune diseases such as Type 1 diabetes, rheumatoid arthritis, multiple sclerosis, lupus and inflammatory bowel disease.
Some people are more likely to contract an autoimmune condition than others, with women twice as likely as men. Research has not identified the exact cause of these conditions, and treatment often focuses on reducing immune activity and treating symptoms.
Emma and Therese are Band As (Grade 7 equivalent) in the Government Security Group within the Cabinet Office. Both have autoimmune disabilities, though seeing and listening to them, you would not think there was anything amiss. As with many disabilities, their conditions are non-visible.
Emma and Therese’s personal stories provide helpful insights into how autoimmune conditions can affect individuals, and the type of support that can help them to overcome the challenges they experience and to maintain a full career.
Emma's story
Emma with her son
I was diagnosed in July 2017 with the lifelong condition multiple sclerosis (MS), for which there is currently no cure.
It all started when I fell whilst playing football with my son at the park. I woke up the next day with pins and needles in both my legs and feet; the kind of sensation you have after sitting on your feet for too long. After a number of tests the diagnosis was arrived at quite quickly.
Since that initial diagnosis and returning to a high-profile work role on a very busy programme, I have experienced further ‘relapses’, which have mainly resulted in the loss of power in my legs. However, thankfully, this has been restored after rest and steroid treatments.
Therese’s story
Therese with her daughter
I have a connective tissue disease called Sjogrens syndrome, and have recently been told I may also have Lupus. Autoimmune conditions are often related and notoriously difficult to diagnose. These are not as well known as MS, but still have very similar symptoms, such as overwhelming fatigue, muscle spasms, migraines, neurological pain and numbness in parts of the body.
I had a stroke some years ago as, over time, the chronic inflammation caused by autoimmune diseases can take its toll on many major organs in the body. I also have Myoclonic seizures on an almost daily basis. These have to be controlled by a raft of medication, so the flexibility of working from home allows me to deal with the side-effects of the medication such as extreme fatigue.
How does our condition affect us?
As everyone is unique, no two people have the same experience of these conditions, which makes it hard to manage. Therefore, we have both tried a plethora of drugs to help dull down the symptoms, but there is a fine balance between managing symptoms and still being able to function, as the medication often has a sedating effect.
So, every day we wake up wondering how we are going to be feeling, as no two days are the same. Therefore, we take each day as it comes. We have both been through the change curve, from thinking ‘why me?’ and ‘it’s not fair!’ but then quickly realising that this does not make things any better and putting things into perspective.
If anything, having these conditions has made us much stronger people and has meant that we look at life from a different perspective. We step back more and ask, ‘is it really a big deal?’, and make the most of each day, focusing on what is important.
What support do we need?
We both work full-time on challenging and demanding programmes. However, we would not want it any other way, as making a solid contribution is what keeps us going.
We have received tremendous support from our line managers, teams and HR. For example, as appropriate adjustments, we both work at home the vast majority of the time to limit travel into London, which can be stressful for anyone! We also work more flexible hours based around how we are feeling, to help manage the fatigue, making effective use of available IT. Our colleagues have played their part in making the extra effort to include us fully in the team, such as ensuring that dial-in facilities are always available for meetings.
It was not until we had read the OH reports and saw the word ‘disability’ that we even realised that what we had was classed as one. It was quite an enlightening and emotional moment. Since then we have sought to raise awareness of autoimmune conditions and to encourage others to access the support they need.
Speaking out can be daunting, but based on our experience there are tremendous benefits in doing so. We have both accepted that things are what they are and it is down to us to turn things around, making an unfortunate situation a positive one!
Learn about disability at work
I am indebted to Emma and Therese for sharing their personal stories and for inspiring me, and hopefully others, to do more to raise awareness of autoimmune conditions.
Their story also serves as a useful reminder that only 20% of people are born with their disability and that disability is often acquired during their working lives. If you too have acquired a disability since joining the Civil Service and, perhaps like Emma and Therese, only realised that you have a disability after reading about it, why not check that your disability status information on your department’s HR system is up to date.
Wow, we are truly blown away by all of your responses to us sharing our stories with you. It is so empowering and humbling to learn that we are not on our own, either. What this means is that we can come together to support one another - learning the different ways for how we deal with our conditions the best way that we can at work so we can continue to add value and enjoy working.
We really hope also that colleagues across the Civil Service recognise the battles that we face daily and therefore empathise and support, rather than judge us, when we need adjustments to be made having brought our struggles into the light.
Please do use the networks the Civil Service provides to people who suffer from all types of disability, and don't be afraid to have that conversation with your line manager. There are people who can support you with this also, if you need someone to be independent, such as your departmental workplace adjustment team or the Central Workplace Adjustment Service review route.
If you are to take anything from this blog, it is that you are not alone. There is support out there to help you manage things in a way that can work for you. It might be trial and error at the start, but if you persevere then you will find the right balance that allows you to get the most out of work and, conversely, work to get the best out of you. Stay happy, healthy and positive.
I have 2 sisters with M.S. and to use the term invisible is frankly wrong and misleading. Whilst Emma has been lucky to have steroid treatment which have worked for her to make her condition invisible, it is by no means representative of my experience of the condition in my family and does a dis-service to lump the condition of M.S. under the umbrella of invisibility.
Therese, I have Sjogren's Syndrome also. Due to this, my Salivary Glands don't work at all so I continuously have a dry mouth. I have to carry water everywhere I go. This can be really awkward and sometimes can't speak unless I have water close by which can have an adverse effect especially when on the phone. It also has an effect on my teeth as your saliva is your own antiseptic for the care of your mouth. Eating certain foods is also a problem as you need a dish that has a sauce or gravy. This has led me to have dry eyes which again can affect on many things such as working on the laptop and even driving the car. I am also lucky having a line manager who understands but these things can't be seen and yes you can look perfectly well but underneath you don't always feel like you look. I also don't recognize myself as being with a disability and I'm so glad you have highlighted these invisible conditions. More people should be made aware of these.
Therese, Amongst other things I have Sjogrens Syndrome. I am so happy that it has come out into the open and there are other sufferers as I always feel that people think I'm making it up as no-one has ever heard of it. They just stare at me and I feel such a fraud because I look healthy. When I get a flare up the fatigue is compounded by the pain in my bones, I could happily cut an arm or leg off to get away from the pain. My tear ducts dry up and it feels like my eyes are coated in sand, they are so sore, no matter how many eye drops I use. Arthritis in my feet means that some days I struggle to walk and in my hands stops me from carrying things or driving. I am lucky to have the understanding of my managers. I have shorter working days and can take breaks when I'm travelling, work from home and occasionally lie down in work if it gets too bad. Without this, sometimes I would not have been able to drive myself home.
I didn't realise there were so many other people with similar, and sometimes worse, situations. I feel that it is important to let others know that they are not suffering alone.
Thank you Emma and Therese for sharing your stories, It's so refreshing to hear everyones story and how we all have similar problems with pain and fatigue. That we are not alone. I classic Ehlers Danlos Syndrome, I was diagnosed at an early age, the problems I have now are completely different to when I was a child. I went into heart failure while in labour with my daughter 21 years ago, the shock caused my Fibromyalgia. I have an underactive thyroid, B12 defficient, dangerously high blood pressure, caused by Work-Related Stress, chronic kidney function caused by prolonged high blood pressure and type 2 diabetes caused by kidney function. Plus a few other bits and pieces. I can manage my pain to some extent, its the fatigue that's a killer for me, because it's out of my control. Go to bed tired, wake up tired. Having a shower drains the life out of me. I need a power nap most days when I get home from work. I work compressed hours with a day off every other week. I have changed my day off from a Monday to a Wednesday, I work from home on a Wednesday on my long week, it's the best thing I could have done. My fatigue is a bit more manageable. My disability does slow me down, but I'll never give in, it can be so hard sometimes, I know if I give in, my disability will consume me and I can't let that happen. Take care x
What an amazing blog! Massive thanks to Emma and Therese, and all other contributors. I too have a chronic incurable autoimmune condition (Dermatomyositis, since 2014) and I had no idea I was one of such a big community of people facing similar issues within the Civil Service! The experiences of many of those who've posted here really resonate with me:
- the length of time it takes to get a diagnosis (over a year for me):
- the sacrifices and life changes which are necessary to "make it work"
- the daily struggle with fatigue and pain
- trying to manage adverse side-effects from the swathe of medication
- the unpredictability of how symptoms will manifest from one day to the next
- the difficulty articulating to colleagues what's wrong when there are often no visible signs, the condition is not well known/understood (and takes half an hour to explain!!)
But yet here we all are - living our lives, holding down jobs and making the best of it! 🙂 As several of you have commented - I too feel very fortunate to work within the Civil Service; I've had three CS line managers since my diagnosis, all of whom have been fully supportive and understanding. Plus I unapologetically use the workplace adjustment passport, occupational health, alternative working patterns, flexi-working (including the opportunity to work from home) to full effect! I hope this blog will help non-sufferers gain an understanding of some of these lesser-known disabilities so we can all work together to best effect.
Interesting article and so glad this is being highlighted! I had a Bone Marrow Transplant as a baby as I was born with a rare condition called Severe Combined Immunodeficiency (Jak3 SCID). This in turn has caused Chronic Fatigue Syndrome, Joint Hypermobility, gastric problems, skin problems, dizziness, low immunity to infections/viruses and longer recovery period; which basically means I never feel 'well' but have some better days than others. I now have a non-working day on a Wednesday to help me cope with the fatigue and hospital appointments etc. Since doing this the fatigue is not as bad but still there. I have also had comments that 'I look ok'. We do become good at hiding our health problems and appearing ok to others. When I was younger I thought it was all normal until I told my consultant about the problems I was trying to cope with. We don't want sympathy just understanding. Thankfully I now have an understanding manager 🙂
Thank you for an interesting and helpful article. I was diagnosed with ME nine years ago. It took seven years and three OH asssessments to get appropriate reasonable adjustments, including not having a daily 3.5 hours commute on top of a working day. I looked okay but was exhausted. Now that I have a suitable work life I can minimise the impact of work on my health. The right reasonable adjustments are absolutely key to keeping people in work. Before I had them, I reckoned I had six months at work before I would have to give up. Now, if all things remain constant, I look forward to making a useful contribution and retiring many years hence.
Therese, I have Sjogren's Syndrome also. Due to this, my Salivary Glands and Tear ducts are damaged and I struggle some days with this. Also, I have the start of Rheumatoid Arthritis. I am pleased that you are highlighting this and that I am not alone.
Thank you both for sharing your stories. I was diagnosed with SLE (Lupus) in October 2017 and I am still learning how to live with this disease. For me, dealing with stress and my emotional wellbeing is key. I have been really well supported by HMRC and this has enabled me to remain in employment (at one time I didn't think that I would ever feel well enough to continue to work and have the energy to run a home and look after my family). I hope that more people are now aware of invisible disabilities and are able to have more empathy for colleagues who struggle on a daily basis.
This line in your post "It was not until we had read the OH reports and saw the word ‘disability’ that we even realised that what we had was classed as one. It was quite an enlightening and emotional moment." has struck a chord with me.
I have had some serious health issues the past 2 years that have now had that same line appear on my OH report. In my case it is respiratory condition (initially asthma but now I also have a lung fibrosis) which has been classed as a disability. Never occurred to me that it was one.
In my case, I am not in a role where I can work from home (not an issue - my department is amazingly supportive). However, I need to look to the future as my department work will be changing. I want to (now I have got my health issues managed) look to changing roles in a year or so. I have to consider working in London and making better use of my skills and experience.
I would say that it is VERY difficult to find roles within the Civil Service which do actively offer/encourage working from home. As I will need to consider working in a London based role, this option would be incredibly helpful in enabling me to manage my ongoing condition. Though roles have "flexible working" often stated, this implies flexi time and does not explicitly state working from home. Its all very well for Band As to get that kind of flexible working. For Bands D, E and F, it is very difficult indeed, and often discouraging when its not clear. Its a very difficult request to make.
Perhaps encouraging job roles to have clear outlines of the type of working that is available rather than lumping it under "flexible working"?
I was born with Ehlers Danlos hypermobility syndrome - very invisible until I started to walk with a walking cane; this wasn't diagnosed until 2002 very little was known about problem then and much is known now. Basically my joints partially dislocate daily/occasionally fully dislocate when I move, pain is a daily battleground that adverse weather conditions can make so much worse; this leaves you with irreversible tissue, muscle and bone damage. My pace in life i.e. at work has slowed down over last 4 decades as the problems have degenerated. The early dismissive attitude by medical profession that I had no problems and it was childhood growing pains/way I walked/how I did every day things was awful to hear, a 2nd referral in my early 20's by a GP with severe arthritis was how I saw a consultant and got my diagnosis. I manage constant pain with daily physio/pilates and other exercises, medication [taken only when can't cope with other methods], microwavable heat bags, muscle and heat gels; I have an extremely high pain tolerance. Worst comments received were colleagues saying I was slacking off; then a disabled ex-colleague stating I was disabled I was very upset as I didn't feel disabled [in 2007] but reality is I am disabled. I never let the disability get me down I pace my life/work to balance my body's limitations but alas there are some things I will never do again e.g. hiking up hill/down dale but there is much I still can do - my motto 'Never give in or give up but pace life and take each minute in each day as it comes' and so far this ethic is working just nicely [plus I've 19 months to go before retiring].
Hi, so good to have discussion around this! I have IBD and have to go through formal attendance management procedure every time I have a flare, as it always takes me over my trigger points. I have had 3 OH referrals (my condition doesn't change). Has anyone had any luck getting there trigger points extended?
Hi, I'm also glad that invisible disabilities are being talked about. I have suffered from Polymyalgia Rheumatica for over 3 years now, a condition which causes pain and stiffness in my shoulders, neck, legs and arms and fatigue also as I never get a good night's sleep. I never know when I wake in the mornings how bad I'm going to be and have difficulty dressing etc. My manager has been very understanding and put various things in place to help me with my day to day tasks at work. Not all of my colleagues know I have this illness and when they ask how I am I just automatically say ok but of course I'm not. I don't look ill and most days are a real struggle. After a 2 year course of steroids and a weight gain of over 2 stone I am now trying to get back on track. I am on new medication and have lost the weight I put on. I have been told this illness can last for up to 6 years but hopefully not in my case. I will beat this!! Thanks to everyone for their contribution, nice to know how much support there is.
This is a brilliant post, I really admire you for being open about your invisible disabilities. I hope to have that confidence in future and try to help workplaces to become more inclusive and accommodating. I really believe disabilities don't make us weaker employees, they actually make us stronger employees because of our resilience. With reasonable adjustments there's no reason we can't thrive just as well (if not better) than any non-disabled employee - something for hiring managers to consider. Remote working and limiting travel to London seem like great ideas. Thanks!
Wow, some really inspiring stories here!
I have Hashimoto's thyroiditis, fibromyalgia and chronic daily migraine syndrome, which means I have migraine on more than 15 days a month (normally most days). I am also being tested for ME. My local line manage is great but higher up are not so supportive and refuse to recognise CDMS as a disability despite it being covered under the Equality Act and recognised as a disability by NHS and the WHO. There are days where it is all I can do to crawl to the bathroom and am so fatigued and nauseous). Has anyone else had problems with similar issues? Thanks for all the inspirational stories!
Hi, really good to read your article. I have IBD and am frustrated by always having to go through formal attendance management procedure because I always exceed my trigger points when ill, due to the nature of my illness. I have tried to get my trigger points extended but after 3 years of trying have been unable. It would be great if managers could understand the randomness of flare up's of these diseases, and that we cannot control them!
Hi guys, I'm So glad that the invisible disabilities are now being talked about, I have a hidden disability. I suffer from Fibromyalgia and arthritis and a few other medical conditions. This is a condition that has wide spread pain and fatigue also. It has similar traits to MS. So when I read all the comments it makes you feel better and also makes you realise your not on your own. Show how much support from people is out there.
I too would like to add my thanks and appreciation of this article, to both our colleagues and those others who have made me better informed...I always thought I was pretty well up on all things Equality related, but these very inspiring stories have really helped me to understand better those disabilities that we cant often see and much less have any experience of..so very many thanks to everyones copntribution and its really great of you to share your stories.
Hi to fellow sufferers. I was diagnosed with Sjogrens around 18 months ago and initially did not go to the Drs as just assumed my tiredness was the same as my friends and colleagues with children, house to run, work etc. I was lucky enough to see a Specialist very quickly via Benenden and he diagnosed my Sjogrens, cue lots of research when I got home as I had never heard of it! His explanation that I was not experiencing tiredness but fatigue made so much sense as the waves of exhaustion are not easy to describe, tiredness sounds so lame. My joints and limbs are so achey and sore and just a slight bump into something is extremely painful. My Manager has been really supportive and I manage my condition by going at my own pace if I am travelling. I quite often say to colleagues "you go on ahead" as I know I am so slow but I get there eventually and plan more time accordingly. I have to faff about when travelling looking for lifts in stations but I do it. My younger sister by 3 years has got Rheumatoid Arthritis and has had to give up her job as a Train Manager, I count my lucky stars I am not that bad and with DWP's support, I can carry on. Serena Williams has Sjogrens too believe it or not. Best Wishes to you all
My late father had Rheumatoid Arthritis which was triggered by an accident at work when he was in his late 50s. It mainly affected his hands and feet, which would swell in either excessive heat or cold. He also had AMD, the type that was stable, which affected his central vision, which is another hidden disability. I have a school friend from the 70s who lives near me who has Lupus, which severely affects his day to day living. He is unable to work, walking his dog is a real challenge for him, which he tries hard to do, so I am full of admiration for him not giving up on life completely. It is good that we are talking about unseen disabilities and breaking down the barriers of ignorance. I experienced ignorance first hand because I was born with a bi-lateral cleft lip and palate and was bullied at school, mainly because people did not understand how and why the condition occurs. Thankfully, the attitudes of the 1960s, portrayed in Call The Midwife on 27 January 2019, have changed for the better.
Emma, Therese, thank you both so much for writing so openly and inspirationally. I too have Lupus and Sjogren's. I live with joint pain, fatigue and troubles with my vision due to the severity of my dry eyes. I am very grateful for really good support and flexibility at work that allow me to manage my workload around frequent hospital appointments and desk adjustments that help to manage some symptoms.
I've found the 'disability' question difficult to answer due to the complex definitions of 'substantial' and 'normal daily activities' so have not so far declared. And I can definitely relate to the 'change curve' comment, having lingered in 'denial' for several months! Here's hoping you both stay on top of your symptoms and in control of your lives.
Really interesting to read these articles. Thank you. My mum has been in remission since 1995, so we're always very careful around her. It still amazes me when I have to remind people to cover their mouths when coughing, and to use a handkerchief when they sneeze. Yuk! In such a paper-based industry, I'm appalled to see others lick their fingers before riffling through pages. Paper harbours SO many germs for a significant time. Rubber finger-thimbles can stop germs spreading, and for some that can mean the difference between life and death.
Great article. A family member suffered with ME for many, many years and I think the two most frustrating things (other than the illness itself) was that people couldn't "see" it and therefore almost questioned it, and that her work didn't understand it.
I think this sort of article really enables those without the first hand knowledge of invisible disabilities to have a deeper understanding of what it's like and how to support.
Thank you for sharing your stories its nice to find out you are not alone in suffering from an invisible disability, as sometimes you do as it is hard for people to understand as I keep getting told well you look 'normal' what ever normal is? I have fibromyalgia and cervical spinal stenosis and as someone has already mentioned you have to take things day to day as you never know how you are going to feel. The ability to work from home is great as some days you are so tired and stiff it takes 10 minutes just to put your socks on.
Have really found this interesting as I have been diagnosed with fibromyalgia, frozen shoulder, thyroid issues and a form of arthritis. I am still at the stage where I am trialling medications for the pain, but the tiredness is the killer.
If I have "flare ups", I want to sleep for hours or I cant sleep at all. Again, people say "What's up? You look fine." Trying to explain it to them is very difficult.
I have had measures put into place that help with the pain, e.g. Chair, keyboard and mouse, but the tiredness is always there. I still work and do compressed hours so that allows me a "3 day weekend" and I have a "passport" that I can take from role to role if required.
I have just recently got promotion, and although the support I have had from the previous role and the new one has been brilliant, I have had to struggle to get people to accept the passport due to lack of knowledge and understanding. Early days for me so a long road ahead. Good luck to all and undisturbed nights of sleep!!!
Many thanks for sharing your personal stories. I have FMS and was finally diagnosed after nearly 20 years of going back and forth to doctors and hospitals. So little is known still about this condition and most days I definitely "don't look ill", but then people don't see the fact that I may have to go to bed as soon as I get home from work as I have used up all my energy for that day. Or that the reason I booked that Monday off is because a day out on the weekend requires me to sleep for a full day before I can get "back to normal". We become very good at hiding and self-managing, but to be able to be open about this at work is very important. Even little things can make the world of difference like changing my working hours to starting an hour later because it takes my pain is much worse in the mornings but I don't mind working late. It has also helped avoid the morning traffic!
Reading your stories has been very powerful and great that you are raising awareness about invisible disabilities.
It's great to see awareness raised around invisible disabilities. I suffer with Fibromyalgia. It's a very difficult condition to live and it doesn't help that I don't look ill but some days can be a real struggle. Thank you Emma and Therese for sharing your stories.
Several very important points arise in this article, and anyone who has an autoimmune response should be able to relate to them, so well done for widening that experience, Emma and Therese - for one, it's good to know that there are others out there, and for two, it's a valuable insight for those who may not be aware of what we have to deal with at a base level; it's not just the episodes, it's the day-to-day "we're never fine, but we do have 'better'".
The two points that should really resonate are that although we all have similar responses, we have different experiences - no two are identical, even if they are alike; and we become very efficient problem solvers. The average person's commute may be a routine, even a chore, but with a rapidly-shifting, day-on-day condition, yesterday is not an indicator of tomorrow, and we're constantly working on today, and every commute for us is different just as a starter; the working day doesn't start at work for us, we have to make assessments and decisions throughout to get us through. You can't dither or put off, your condition does not wait for you.
I've had Crohn's for over 20 years and the days where it hasn't been an issue I can count on one hand, and it is bunched in a fist - there are none. Some days flow with minimal disruption, others are a constant trial of toilets, fatigue, pain and joint problems and you might look fine, you might look well, even, but that guard is never down. Finding and managing remission is key, and we're fighting that fight even when it looks like we aren't, we just don't talk about it because it's what we do.
Excellent article once again - keep well, fingers crossed.
Thank you for this very important blog post. As a sufferer of an invisible illness myself I think it is really important to raise awareness of the issues we face which can affect our ability to work so that others can understand what is needed to help people like us to thrive at a workplace.
Thank you for sharing with us your personal stories. I hope that it will help others to understand the challenges that you have faced and how we can all be more supportive and understanding.
Thank you for sharing this blog. I have highlighted it to my team as I think that we should do all we can to raise awareness of hidden disabilities and support our colleagues.
A great post thanks both for sharing your stories. It is so important to help educate our colleagues that a) not all disabilities are visible and b) even with a visible disability there can also be further hidden ones. My MS has gone from hidden to visible but in a way that has not been as helpful as one might imagine. I think people focus on the visible part of my MS, I use crutches now, and don’t necessarily know that in fact it’s my hidden disabilities that are the most problematic symptoms I have day to day in the workplace.
On fatigue - sadly it’s not a particularly well understood issue amongst clinicians and it can be devastating when it comes to staying in work. Self management really helps and sometimes trade offs can be made. For example I have had to stop using meds for spasticity and pain so I can keep working. And there are medications that can help fatigue in some people with MS (not sure about other auto-immune conditions sorry).
Sometimes you have to do the research yourself and take it to your clinical team and push. I did a few years back at a point where it seemed like I might have to stop work, and managed to get prescribed an anti fatigue medication. I know from occasions when I forget a dose that I wouldn’t still be working without it!
Many thanks for your comment in which you make a really important point about people often focussing on the visible part and not knowing about the invisible bit that in most cases is the most troublesome. That is something that people really do need to be aware of so thank you for mentioning.
Thank you also for highlighting that there is in fact medication out there to help to deal with fatigue (even if this is sadly just for MS sufferers), because I certainly had no idea about this. I have just tried to control my fatigue through balancing the amount of sedative medication I take to manage the MS symptoms as best I can and also rest when I really do need to. This is something that I, and others now I am sure, will look into.
Thanks again for your valuable comments. It is wonderful to hear that you are still managing to work through it all. Take care and my very best wishes to you.
Many thanks to you all for your very moving responses, whether you have been affected directly or through your loved ones. It can be difficult living with an invisible disability, and your comments show how many people manage to continue to work with the right support and adjustments in place (as well as getting the medication right!). For some, this is a very long road. I am happy to speak to anyone directly if you feel it would be helpful. We are fortunate in the Cabinet Office that there is an amazing network called ABLE, which gives us a collective voice and focuses on different areas affecting people with disabilities and helps raise awareness amongst our colleagues. I recommend having a look on your intranet to find out more about your own organisation's disability network, and there is information about the cross-Civil Service disability networks on the Civil Service equality and diversity page.
Really great article raising awareness of hidden disabilities, I'm also in the same positon, have numerous hidden health conditions, people always say to me there is nothing wrong with me you look so healthy,. It can get very frustrating. I wish you both well with your treatments. Having cancer and surviving several strokes make you stronger.
I am sorry to learn that you are experiencing a number of health issues and I know how frustrating it can be when people do not look beyond physical appearance. So I am hoping this blog will get the message across that the majority of things people have to deal with on a daily basis are invisible, whether a health condition, disability, caring commitments, etc.
I too can say with certainty that dealing with conditions such as these does make you a stronger person.
I really hope that people who are line managers do take the time to read blogs like these and also attend training and awareness sessions that will help get these messages across. They can then also learn from steps that other managers have taken to support their employees. Please share this to spread the word.
I was diagnosed with Rheumatoid Arthritis about 18 months ago, it's a condition where your immune system attacks your joints and it is managed by taking immuno-suppressants.
When I was first diagnosed, I honestly thought that I would have to leave work because I was really stuggling to move around, but I had no idea at that time how effective the drugs are nowadays.
I also knew that I was struggling emotionally so I arranged to have some counselliing and it turned out to be a smart move. It gave me tools to fight on through the difficult first months, post-diagnosis, until I found the right medication.
Although it is getting more managable day-by-day and my joints aren't as painful, I still have to deal with the crippling fatigue, and there is no medication that can help with that.
Respect to all those who cope with an invisible illness!
Hi Janet I also have Rheumatoid Arthritis (16 years) and fatigue is now a thing of the past for me, thank God, as it is the symptom that I found most unbearable. I had to try a number of drugs before we found the right one for me and once I did the fatigue just evaporated. So don't lose hope, some drugs do work on the fatigue too. Wishing you all the best.
I have this too and the fatigue is the worst symptom for me, there is no substitute for rest. Something that transformed my general health was having a day off in the week, it really makes a difference to what I am able to do. I would recommend exploring whether a change in working pattern (if possible) can help you manage your symptoms.
Great advice ladies. I am really pleased to hear how supportive work have been and how you have now found things that work for you. Not giving up is definitely the right attitude to have 🙂
A really interesting blog and comments. I have diagnoses of both Type 2 Diabetes and Rheumatoid Arthritis, but both conditions have been in remission for a number of years, allowing me to live drug free. I achieved this by going low carb - the NHS recently launched a low carb app, which you can find in their App Library. I looked at the work of Dr Wahls, who achieved great results with her MS by changing diet and is now conducting clinical trials; Dr Fasano whose work was relevant to Rheumatoid Arthritis; and Dr Unwin, an NHS obesity and Diabetes Champion.
I kept taking my medication until my care team and GP agreed that I no longer required it.
As a result of the changes I have made, I am now pain and fatigue free from my conditions, and I am in fact regaining some of the strength that I lost, making me a very happy person. This method may not work for everyone, but as the Dietdoctor website shows, it works for many.
Worth a look to see if something so simple can help anyone else reading this blog!
Wow Laura, that is a really amazing story and something that I would certainly be interested looking into.
Have you ever thought about doing your own blog to tell others what and how you made this changes and how the results of those changes presented themselves as I think people with autoimmune conditions would be very interested to look into this given the positive results it has had on your your way of life. You could even link it to this blog!
Thanks again for commenting and increasing awareness that diet can have tremendous benefits.
Hi, I'm glad you mentioned diet and MS as many people have had success by making/including diet and lifestyle changes.
In addition to the ones you list, OMS is an evidence based program put together by Prof Jelenik (who has MS himself). All information is available online for free in an understandable format, with research clearly documented and explained.
Best wishes
Thanks for your comment and I am sorry to learn of your recent diagnosis. It is good to hear that you have been seeking support through counselling to deal with early diagnosis and there are an awful lot of charities out there that can help with this or sign post you to the right support.
Yes fatigue is a biggy and unfortunately, as you point out, there is no medication for that. I have been drinking aloe vera juice every morning and I have found that has really helped me increase my energy levels. After all, aloe vera is the healing plant 🙂 It's really difficult managing the fatigue with work, but I have just learnt to give in to it as if you are feeling that way, your body is telling you that you need to rest. I have found that if I have fought on then I have ended up having a relapse. Work are content with me working flexible hours so that I can take breaks when I need to rest.
I have type 1 diabetes, another autoimmune disease. I've felt ill for very long periods over the years, as it's often very hard to throw off viruses and this exposes you then to contracting other illnesses. I've found it very hard and frustrating at times, as I often think I'm getting better, only to be confronted with another wave of acute malaise that lays me up again.
I think it's people understanding this, particularly your nearest and dearest, that helps you get through these times; that, and the fortitude and determination you develop to get you through the hardest times. I've got total respect for people with these horrible invisible issues.
Your words are so true and yes, I too could not have not got through the last couple of years without the support from my friends, family and also my colleagues at work.
I think the difficulty is not knowing how you are going to be from one day to the next and actually you just have to take each day as it comes. That is really hard for someone who likes to plan a lot (I am a planner), but I have just had to change my approach.
A lot of how well you cope also depends on the time of person you are and whether you are going to sit back and let it take control of your life or you are going to take the control as best you can.
It's great to see an article increasing awareness of these conditions. My wife has Connective Tissue disease and, now, suspected Scleroderma. It took over 3 years for her to get her initial diagnosis as 'problems' with different parts of her body were referred to different consultants; Eyes to Opthalmology, Skin & Hair to Dermatology, Digestive System to Gastroenterology, reproductive system to Gynaecology, Heart & Blood vessels to Cardiology, and, by the time she went to see the relevant consultant, the 'problem' wasn't as severe or its cause couldn't be identified.
Connective Tissue disease comes under Rheumatology and, if she hadn't done her own research, and demanded to see them she probably wouldn't have been diagnosed (it took them over a year to diagnose her).
Despite medication, she is unable to work due to the number of hospital appointments she has and the fact our 3 children also have health issues (eldest suspected Connective Tissue & diagnosed PoTS, middle Coeliac and youngest Autism, Dyspraxia & Sensory Processing Disorder).
Many thanks for your response. I am so sorry to learn of your wife's condition and the very long journey she has had to go through in order to get a final diagnosis. Unfortunately I have heard this many times before and I feel very lucky to have been diagnosed so quickly. I think it's the really complex nature of these conditions and the fact that they do affect a number of different areas of the body that makes diagnosis so tricky. There isn't someone in the medical profession who can look holistically across the piece and join the dots as the consultants only specialise in their own areas.
I am sorry to learn that your wife is unable to work due to the commitments she has for managing her own welfare as well as that of your children. I hope you continue to get the support that you need Paul as well.
thanks for your kind wishes. I agree that it is the complexity of the conditions, together with the fact 'flare ups' come and go that make diagnosis more difficult.
Fortunately for us we can manage on my earnings and I must say work have been very understanding and flexible with me. It's one of the reasons I have stayed with the Civil Service all these years (24 in March).
My wife is a member of a number of Lupus groups (North West UK and on Facebook) and has found a lot of support and help from these.
Yes, it is certainly one of the many benefits of working in the civil service as they are also very supportive to those that are caring for people with disability and health conditions. I too have remained with the civil service for that reason.
May you and your family continue getting the support that you need. My very best wishes to you and your family.
Hi guys
My disability is very similar to Emma's. I started with pins and needles in my hands and feet in December 2011, and a few days later I was paralysed from the neck down and in a great deal of pain. I spent nine weeks in hospital.
My condition is autoimmune too. It's called Guillain-Barre Syndrome and is quite rare. My immune system targets the myelin sheath that surrounds the nerves, which is why I have a lot of pain. There is no cure.
I have been on a lot of medication since, including oxycontin which is an opiate. I stopped taking it as I wasn't able to function properly wih it. When I came back to work almost six months later, everyone said it was too soon, but I believe it helped me get to where I am now.
I have to get taxi's to work as I can't use public transport due to weakness in my arms, and because of fatigue I only work four days a week with a day off in the middle.
I am thankful I can do that and also for the support I get from my colleagues. I think coming back to work made me stronger.
Many thanks for your comment and for speaking out about your condition, which is one that I have never heard of, but has real similarities to MS.
I really do know how it feels to take medication that helps to dull down the symptoms, but then the side effects of this makes it hard to function and therefore you have to strike that balance. It has taken me quite a long time to get there, but I believe I have now (touch wood).
I am really pleased to hear that access to work have supported you and you have found that coming to work the right number of days for you has made you stronger and kept you going. I really do find that having that purpose gives you something to strive for and that's why I love working for the civil service as you are helping others with the services we provide or are putting in place.
Hello
As a fellow MS suffer it was lovely to ready your stories. I have had MS for more years than I can remember (I am that old). I think problems started following a horse riding accident resulting in a ruptured spleen which weakened my immune system and the MS happened a few years later.
It can be a very daunting and scary prospect living with an invisible disability, but with the right care and support it can be very easily managed. I am encouraged to see shops now putting on Disabled Toilets "Not all disabilities are visible" which makes me feel a bit better and less of a fraud.
Keep fighting and as they say in Galaxy Quest "Never give up Never surrender"
Many thanks for you response and I am sorry to learn that you also suffer from MS. When I asked if my fall at the park triggered my MS, the medical staff said no and it was just a coincidence, but I have heard so many stories, like yours, where the MS seems to have been triggered to produce noticeable symptoms after an accident or fall. I too have had MS for years, but just not known about it. Although on reflection I have always suffered from fatigue and on my brain scan a number of 'old' lesions were present.
I do still think that the problem we face with these conditions is that they are invisible and it is through blogs like these that really does help raise awareness and make people think before questioning why someone may need certain reasonable adjustments.
Thank you for your support with this and through speaking out we can help spread the word.
Hi Emma, this article really warmed me heart, as a Lupus sufferer I have had some not so supportive managers and knowing there are caring employers out there makes all the difference. I'd love to speak with you, when ever you're less busy.
As a fellow MS sufferer I totally understand where you are coming from. I was diagnosed 13 years ago, four months after I had my Son. I was diagnosed fairly young at 23 and at first thought my life was over - I was completely paralysed down my left side but after physio and steroids I gradually found that the majority of the feeling came back and I decided not to let my illness get me down, I have had quite a few more relapses since then and have now decided to stop worrying and take each day as it comes. My current manager is extremely supportive and am thankful to have her 🙂
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65 comments
Comment by Emma & Therese posted on
Wow, we are truly blown away by all of your responses to us sharing our stories with you. It is so empowering and humbling to learn that we are not on our own, either. What this means is that we can come together to support one another - learning the different ways for how we deal with our conditions the best way that we can at work so we can continue to add value and enjoy working.
We really hope also that colleagues across the Civil Service recognise the battles that we face daily and therefore empathise and support, rather than judge us, when we need adjustments to be made having brought our struggles into the light.
Please do use the networks the Civil Service provides to people who suffer from all types of disability, and don't be afraid to have that conversation with your line manager. There are people who can support you with this also, if you need someone to be independent, such as your departmental workplace adjustment team or the Central Workplace Adjustment Service review route.
If you are to take anything from this blog, it is that you are not alone. There is support out there to help you manage things in a way that can work for you. It might be trial and error at the start, but if you persevere then you will find the right balance that allows you to get the most out of work and, conversely, work to get the best out of you. Stay happy, healthy and positive.
Emma & Therese
Comment by Michael posted on
I have 2 sisters with M.S. and to use the term invisible is frankly wrong and misleading. Whilst Emma has been lucky to have steroid treatment which have worked for her to make her condition invisible, it is by no means representative of my experience of the condition in my family and does a dis-service to lump the condition of M.S. under the umbrella of invisibility.
Comment by dsh posted on
Therese, I have Sjogren's Syndrome also. Due to this, my Salivary Glands don't work at all so I continuously have a dry mouth. I have to carry water everywhere I go. This can be really awkward and sometimes can't speak unless I have water close by which can have an adverse effect especially when on the phone. It also has an effect on my teeth as your saliva is your own antiseptic for the care of your mouth. Eating certain foods is also a problem as you need a dish that has a sauce or gravy. This has led me to have dry eyes which again can affect on many things such as working on the laptop and even driving the car. I am also lucky having a line manager who understands but these things can't be seen and yes you can look perfectly well but underneath you don't always feel like you look. I also don't recognize myself as being with a disability and I'm so glad you have highlighted these invisible conditions. More people should be made aware of these.
Comment by G.Commander posted on
anyone had any problems with epilepsy
Comment by Julie Hollins posted on
Therese, Amongst other things I have Sjogrens Syndrome. I am so happy that it has come out into the open and there are other sufferers as I always feel that people think I'm making it up as no-one has ever heard of it. They just stare at me and I feel such a fraud because I look healthy. When I get a flare up the fatigue is compounded by the pain in my bones, I could happily cut an arm or leg off to get away from the pain. My tear ducts dry up and it feels like my eyes are coated in sand, they are so sore, no matter how many eye drops I use. Arthritis in my feet means that some days I struggle to walk and in my hands stops me from carrying things or driving. I am lucky to have the understanding of my managers. I have shorter working days and can take breaks when I'm travelling, work from home and occasionally lie down in work if it gets too bad. Without this, sometimes I would not have been able to drive myself home.
I didn't realise there were so many other people with similar, and sometimes worse, situations. I feel that it is important to let others know that they are not suffering alone.
Comment by Gillian Owens posted on
Thank you Emma and Therese for sharing your stories, It's so refreshing to hear everyones story and how we all have similar problems with pain and fatigue. That we are not alone. I classic Ehlers Danlos Syndrome, I was diagnosed at an early age, the problems I have now are completely different to when I was a child. I went into heart failure while in labour with my daughter 21 years ago, the shock caused my Fibromyalgia. I have an underactive thyroid, B12 defficient, dangerously high blood pressure, caused by Work-Related Stress, chronic kidney function caused by prolonged high blood pressure and type 2 diabetes caused by kidney function. Plus a few other bits and pieces. I can manage my pain to some extent, its the fatigue that's a killer for me, because it's out of my control. Go to bed tired, wake up tired. Having a shower drains the life out of me. I need a power nap most days when I get home from work. I work compressed hours with a day off every other week. I have changed my day off from a Monday to a Wednesday, I work from home on a Wednesday on my long week, it's the best thing I could have done. My fatigue is a bit more manageable. My disability does slow me down, but I'll never give in, it can be so hard sometimes, I know if I give in, my disability will consume me and I can't let that happen. Take care x
Comment by Kathryn Bancroft posted on
What an amazing blog! Massive thanks to Emma and Therese, and all other contributors. I too have a chronic incurable autoimmune condition (Dermatomyositis, since 2014) and I had no idea I was one of such a big community of people facing similar issues within the Civil Service! The experiences of many of those who've posted here really resonate with me:
- the length of time it takes to get a diagnosis (over a year for me):
- the sacrifices and life changes which are necessary to "make it work"
- the daily struggle with fatigue and pain
- trying to manage adverse side-effects from the swathe of medication
- the unpredictability of how symptoms will manifest from one day to the next
- the difficulty articulating to colleagues what's wrong when there are often no visible signs, the condition is not well known/understood (and takes half an hour to explain!!)
But yet here we all are - living our lives, holding down jobs and making the best of it! 🙂 As several of you have commented - I too feel very fortunate to work within the Civil Service; I've had three CS line managers since my diagnosis, all of whom have been fully supportive and understanding. Plus I unapologetically use the workplace adjustment passport, occupational health, alternative working patterns, flexi-working (including the opportunity to work from home) to full effect! I hope this blog will help non-sufferers gain an understanding of some of these lesser-known disabilities so we can all work together to best effect.
Comment by Tammy Williams posted on
Interesting article and so glad this is being highlighted! I had a Bone Marrow Transplant as a baby as I was born with a rare condition called Severe Combined Immunodeficiency (Jak3 SCID). This in turn has caused Chronic Fatigue Syndrome, Joint Hypermobility, gastric problems, skin problems, dizziness, low immunity to infections/viruses and longer recovery period; which basically means I never feel 'well' but have some better days than others. I now have a non-working day on a Wednesday to help me cope with the fatigue and hospital appointments etc. Since doing this the fatigue is not as bad but still there. I have also had comments that 'I look ok'. We do become good at hiding our health problems and appearing ok to others. When I was younger I thought it was all normal until I told my consultant about the problems I was trying to cope with. We don't want sympathy just understanding. Thankfully I now have an understanding manager 🙂
Comment by Jane posted on
Thank you for an interesting and helpful article. I was diagnosed with ME nine years ago. It took seven years and three OH asssessments to get appropriate reasonable adjustments, including not having a daily 3.5 hours commute on top of a working day. I looked okay but was exhausted. Now that I have a suitable work life I can minimise the impact of work on my health. The right reasonable adjustments are absolutely key to keeping people in work. Before I had them, I reckoned I had six months at work before I would have to give up. Now, if all things remain constant, I look forward to making a useful contribution and retiring many years hence.
Comment by Libby Brands posted on
Therese, I have Sjogren's Syndrome also. Due to this, my Salivary Glands and Tear ducts are damaged and I struggle some days with this. Also, I have the start of Rheumatoid Arthritis. I am pleased that you are highlighting this and that I am not alone.
Comment by Moya posted on
Thank you both for sharing your stories. I was diagnosed with SLE (Lupus) in October 2017 and I am still learning how to live with this disease. For me, dealing with stress and my emotional wellbeing is key. I have been really well supported by HMRC and this has enabled me to remain in employment (at one time I didn't think that I would ever feel well enough to continue to work and have the energy to run a home and look after my family). I hope that more people are now aware of invisible disabilities and are able to have more empathy for colleagues who struggle on a daily basis.
Comment by EC posted on
This line in your post "It was not until we had read the OH reports and saw the word ‘disability’ that we even realised that what we had was classed as one. It was quite an enlightening and emotional moment." has struck a chord with me.
I have had some serious health issues the past 2 years that have now had that same line appear on my OH report. In my case it is respiratory condition (initially asthma but now I also have a lung fibrosis) which has been classed as a disability. Never occurred to me that it was one.
In my case, I am not in a role where I can work from home (not an issue - my department is amazingly supportive). However, I need to look to the future as my department work will be changing. I want to (now I have got my health issues managed) look to changing roles in a year or so. I have to consider working in London and making better use of my skills and experience.
I would say that it is VERY difficult to find roles within the Civil Service which do actively offer/encourage working from home. As I will need to consider working in a London based role, this option would be incredibly helpful in enabling me to manage my ongoing condition. Though roles have "flexible working" often stated, this implies flexi time and does not explicitly state working from home. Its all very well for Band As to get that kind of flexible working. For Bands D, E and F, it is very difficult indeed, and often discouraging when its not clear. Its a very difficult request to make.
Perhaps encouraging job roles to have clear outlines of the type of working that is available rather than lumping it under "flexible working"?
Comment by June Armstrong-Pincott posted on
I was born with Ehlers Danlos hypermobility syndrome - very invisible until I started to walk with a walking cane; this wasn't diagnosed until 2002 very little was known about problem then and much is known now. Basically my joints partially dislocate daily/occasionally fully dislocate when I move, pain is a daily battleground that adverse weather conditions can make so much worse; this leaves you with irreversible tissue, muscle and bone damage. My pace in life i.e. at work has slowed down over last 4 decades as the problems have degenerated. The early dismissive attitude by medical profession that I had no problems and it was childhood growing pains/way I walked/how I did every day things was awful to hear, a 2nd referral in my early 20's by a GP with severe arthritis was how I saw a consultant and got my diagnosis. I manage constant pain with daily physio/pilates and other exercises, medication [taken only when can't cope with other methods], microwavable heat bags, muscle and heat gels; I have an extremely high pain tolerance. Worst comments received were colleagues saying I was slacking off; then a disabled ex-colleague stating I was disabled I was very upset as I didn't feel disabled [in 2007] but reality is I am disabled. I never let the disability get me down I pace my life/work to balance my body's limitations but alas there are some things I will never do again e.g. hiking up hill/down dale but there is much I still can do - my motto 'Never give in or give up but pace life and take each minute in each day as it comes' and so far this ethic is working just nicely [plus I've 19 months to go before retiring].
Comment by Kate Thomas posted on
Hi, so good to have discussion around this! I have IBD and have to go through formal attendance management procedure every time I have a flare, as it always takes me over my trigger points. I have had 3 OH referrals (my condition doesn't change). Has anyone had any luck getting there trigger points extended?
Comment by Dawn Haywood-Clark posted on
Hi, I'm also glad that invisible disabilities are being talked about. I have suffered from Polymyalgia Rheumatica for over 3 years now, a condition which causes pain and stiffness in my shoulders, neck, legs and arms and fatigue also as I never get a good night's sleep. I never know when I wake in the mornings how bad I'm going to be and have difficulty dressing etc. My manager has been very understanding and put various things in place to help me with my day to day tasks at work. Not all of my colleagues know I have this illness and when they ask how I am I just automatically say ok but of course I'm not. I don't look ill and most days are a real struggle. After a 2 year course of steroids and a weight gain of over 2 stone I am now trying to get back on track. I am on new medication and have lost the weight I put on. I have been told this illness can last for up to 6 years but hopefully not in my case. I will beat this!! Thanks to everyone for their contribution, nice to know how much support there is.
Comment by Sian Hewitt posted on
This is a brilliant post, I really admire you for being open about your invisible disabilities. I hope to have that confidence in future and try to help workplaces to become more inclusive and accommodating. I really believe disabilities don't make us weaker employees, they actually make us stronger employees because of our resilience. With reasonable adjustments there's no reason we can't thrive just as well (if not better) than any non-disabled employee - something for hiring managers to consider. Remote working and limiting travel to London seem like great ideas. Thanks!
Comment by Laura posted on
Wow, some really inspiring stories here!
I have Hashimoto's thyroiditis, fibromyalgia and chronic daily migraine syndrome, which means I have migraine on more than 15 days a month (normally most days). I am also being tested for ME. My local line manage is great but higher up are not so supportive and refuse to recognise CDMS as a disability despite it being covered under the Equality Act and recognised as a disability by NHS and the WHO. There are days where it is all I can do to crawl to the bathroom and am so fatigued and nauseous). Has anyone else had problems with similar issues? Thanks for all the inspirational stories!
Comment by Kate Thomas posted on
Hi, really good to read your article. I have IBD and am frustrated by always having to go through formal attendance management procedure because I always exceed my trigger points when ill, due to the nature of my illness. I have tried to get my trigger points extended but after 3 years of trying have been unable. It would be great if managers could understand the randomness of flare up's of these diseases, and that we cannot control them!
I wish you both the best health possible.
Comment by sam posted on
Hi guys, I'm So glad that the invisible disabilities are now being talked about, I have a hidden disability. I suffer from Fibromyalgia and arthritis and a few other medical conditions. This is a condition that has wide spread pain and fatigue also. It has similar traits to MS. So when I read all the comments it makes you feel better and also makes you realise your not on your own. Show how much support from people is out there.
Comment by Janine Aidibi posted on
I too would like to add my thanks and appreciation of this article, to both our colleagues and those others who have made me better informed...I always thought I was pretty well up on all things Equality related, but these very inspiring stories have really helped me to understand better those disabilities that we cant often see and much less have any experience of..so very many thanks to everyones copntribution and its really great of you to share your stories.
Comment by Lady T posted on
Hi to fellow sufferers. I was diagnosed with Sjogrens around 18 months ago and initially did not go to the Drs as just assumed my tiredness was the same as my friends and colleagues with children, house to run, work etc. I was lucky enough to see a Specialist very quickly via Benenden and he diagnosed my Sjogrens, cue lots of research when I got home as I had never heard of it! His explanation that I was not experiencing tiredness but fatigue made so much sense as the waves of exhaustion are not easy to describe, tiredness sounds so lame. My joints and limbs are so achey and sore and just a slight bump into something is extremely painful. My Manager has been really supportive and I manage my condition by going at my own pace if I am travelling. I quite often say to colleagues "you go on ahead" as I know I am so slow but I get there eventually and plan more time accordingly. I have to faff about when travelling looking for lifts in stations but I do it. My younger sister by 3 years has got Rheumatoid Arthritis and has had to give up her job as a Train Manager, I count my lucky stars I am not that bad and with DWP's support, I can carry on. Serena Williams has Sjogrens too believe it or not. Best Wishes to you all
Comment by Barry McAuley posted on
My late father had Rheumatoid Arthritis which was triggered by an accident at work when he was in his late 50s. It mainly affected his hands and feet, which would swell in either excessive heat or cold. He also had AMD, the type that was stable, which affected his central vision, which is another hidden disability. I have a school friend from the 70s who lives near me who has Lupus, which severely affects his day to day living. He is unable to work, walking his dog is a real challenge for him, which he tries hard to do, so I am full of admiration for him not giving up on life completely. It is good that we are talking about unseen disabilities and breaking down the barriers of ignorance. I experienced ignorance first hand because I was born with a bi-lateral cleft lip and palate and was bullied at school, mainly because people did not understand how and why the condition occurs. Thankfully, the attitudes of the 1960s, portrayed in Call The Midwife on 27 January 2019, have changed for the better.
Comment by Justine posted on
Emma, Therese, thank you both so much for writing so openly and inspirationally. I too have Lupus and Sjogren's. I live with joint pain, fatigue and troubles with my vision due to the severity of my dry eyes. I am very grateful for really good support and flexibility at work that allow me to manage my workload around frequent hospital appointments and desk adjustments that help to manage some symptoms.
I've found the 'disability' question difficult to answer due to the complex definitions of 'substantial' and 'normal daily activities' so have not so far declared. And I can definitely relate to the 'change curve' comment, having lingered in 'denial' for several months! Here's hoping you both stay on top of your symptoms and in control of your lives.
Comment by Richard Curtis posted on
Really interesting to read these articles. Thank you. My mum has been in remission since 1995, so we're always very careful around her. It still amazes me when I have to remind people to cover their mouths when coughing, and to use a handkerchief when they sneeze. Yuk! In such a paper-based industry, I'm appalled to see others lick their fingers before riffling through pages. Paper harbours SO many germs for a significant time. Rubber finger-thimbles can stop germs spreading, and for some that can mean the difference between life and death.
Comment by Claire posted on
Great article. A family member suffered with ME for many, many years and I think the two most frustrating things (other than the illness itself) was that people couldn't "see" it and therefore almost questioned it, and that her work didn't understand it.
I think this sort of article really enables those without the first hand knowledge of invisible disabilities to have a deeper understanding of what it's like and how to support.
Comment by Annmarie Ward posted on
Thank you for sharing your stories its nice to find out you are not alone in suffering from an invisible disability, as sometimes you do as it is hard for people to understand as I keep getting told well you look 'normal' what ever normal is? I have fibromyalgia and cervical spinal stenosis and as someone has already mentioned you have to take things day to day as you never know how you are going to feel. The ability to work from home is great as some days you are so tired and stiff it takes 10 minutes just to put your socks on.
Comment by Heidi posted on
Have really found this interesting as I have been diagnosed with fibromyalgia, frozen shoulder, thyroid issues and a form of arthritis. I am still at the stage where I am trialling medications for the pain, but the tiredness is the killer.
If I have "flare ups", I want to sleep for hours or I cant sleep at all. Again, people say "What's up? You look fine." Trying to explain it to them is very difficult.
I have had measures put into place that help with the pain, e.g. Chair, keyboard and mouse, but the tiredness is always there. I still work and do compressed hours so that allows me a "3 day weekend" and I have a "passport" that I can take from role to role if required.
I have just recently got promotion, and although the support I have had from the previous role and the new one has been brilliant, I have had to struggle to get people to accept the passport due to lack of knowledge and understanding. Early days for me so a long road ahead. Good luck to all and undisturbed nights of sleep!!!
Comment by Rowan Radford posted on
Many thanks for sharing your personal stories. I have FMS and was finally diagnosed after nearly 20 years of going back and forth to doctors and hospitals. So little is known still about this condition and most days I definitely "don't look ill", but then people don't see the fact that I may have to go to bed as soon as I get home from work as I have used up all my energy for that day. Or that the reason I booked that Monday off is because a day out on the weekend requires me to sleep for a full day before I can get "back to normal". We become very good at hiding and self-managing, but to be able to be open about this at work is very important. Even little things can make the world of difference like changing my working hours to starting an hour later because it takes my pain is much worse in the mornings but I don't mind working late. It has also helped avoid the morning traffic!
Reading your stories has been very powerful and great that you are raising awareness about invisible disabilities.
Comment by Nicola Wragg posted on
It's great to see awareness raised around invisible disabilities. I suffer with Fibromyalgia. It's a very difficult condition to live and it doesn't help that I don't look ill but some days can be a real struggle. Thank you Emma and Therese for sharing your stories.
Comment by Robert Parkinson posted on
Several very important points arise in this article, and anyone who has an autoimmune response should be able to relate to them, so well done for widening that experience, Emma and Therese - for one, it's good to know that there are others out there, and for two, it's a valuable insight for those who may not be aware of what we have to deal with at a base level; it's not just the episodes, it's the day-to-day "we're never fine, but we do have 'better'".
The two points that should really resonate are that although we all have similar responses, we have different experiences - no two are identical, even if they are alike; and we become very efficient problem solvers. The average person's commute may be a routine, even a chore, but with a rapidly-shifting, day-on-day condition, yesterday is not an indicator of tomorrow, and we're constantly working on today, and every commute for us is different just as a starter; the working day doesn't start at work for us, we have to make assessments and decisions throughout to get us through. You can't dither or put off, your condition does not wait for you.
I've had Crohn's for over 20 years and the days where it hasn't been an issue I can count on one hand, and it is bunched in a fist - there are none. Some days flow with minimal disruption, others are a constant trial of toilets, fatigue, pain and joint problems and you might look fine, you might look well, even, but that guard is never down. Finding and managing remission is key, and we're fighting that fight even when it looks like we aren't, we just don't talk about it because it's what we do.
Excellent article once again - keep well, fingers crossed.
Comment by Alicia posted on
Thank you for this very important blog post. As a sufferer of an invisible illness myself I think it is really important to raise awareness of the issues we face which can affect our ability to work so that others can understand what is needed to help people like us to thrive at a workplace.
Comment by Gavin Thomas posted on
Thank you for sharing with us your personal stories. I hope that it will help others to understand the challenges that you have faced and how we can all be more supportive and understanding.
Comment by Jane H posted on
Thank you for sharing this blog. I have highlighted it to my team as I think that we should do all we can to raise awareness of hidden disabilities and support our colleagues.
Comment by Emma Moger-Smith posted on
Many thanks Jane, that is great to hear. Hoping more people will take your lead.
Emma
Comment by Emma Moger-Smith posted on
Thanks for such a positive comment Gill. I am really pleased to hear that you found it informative 🙂
Emma
Comment by Gill posted on
Really good article raising awareness of hidden disabilities and great to read the feedback as well. Thank you all for sharing.
Comment by Cat Macaulay posted on
A great post thanks both for sharing your stories. It is so important to help educate our colleagues that a) not all disabilities are visible and b) even with a visible disability there can also be further hidden ones. My MS has gone from hidden to visible but in a way that has not been as helpful as one might imagine. I think people focus on the visible part of my MS, I use crutches now, and don’t necessarily know that in fact it’s my hidden disabilities that are the most problematic symptoms I have day to day in the workplace.
On fatigue - sadly it’s not a particularly well understood issue amongst clinicians and it can be devastating when it comes to staying in work. Self management really helps and sometimes trade offs can be made. For example I have had to stop using meds for spasticity and pain so I can keep working. And there are medications that can help fatigue in some people with MS (not sure about other auto-immune conditions sorry).
Sometimes you have to do the research yourself and take it to your clinical team and push. I did a few years back at a point where it seemed like I might have to stop work, and managed to get prescribed an anti fatigue medication. I know from occasions when I forget a dose that I wouldn’t still be working without it!
Thanks again for a great post.
Comment by Emma Moger-Smith posted on
Cat,
Many thanks for your comment in which you make a really important point about people often focussing on the visible part and not knowing about the invisible bit that in most cases is the most troublesome. That is something that people really do need to be aware of so thank you for mentioning.
Thank you also for highlighting that there is in fact medication out there to help to deal with fatigue (even if this is sadly just for MS sufferers), because I certainly had no idea about this. I have just tried to control my fatigue through balancing the amount of sedative medication I take to manage the MS symptoms as best I can and also rest when I really do need to. This is something that I, and others now I am sure, will look into.
Thanks again for your valuable comments. It is wonderful to hear that you are still managing to work through it all. Take care and my very best wishes to you.
Emma
Comment by Therese Loveday posted on
Many thanks to you all for your very moving responses, whether you have been affected directly or through your loved ones. It can be difficult living with an invisible disability, and your comments show how many people manage to continue to work with the right support and adjustments in place (as well as getting the medication right!). For some, this is a very long road. I am happy to speak to anyone directly if you feel it would be helpful. We are fortunate in the Cabinet Office that there is an amazing network called ABLE, which gives us a collective voice and focuses on different areas affecting people with disabilities and helps raise awareness amongst our colleagues. I recommend having a look on your intranet to find out more about your own organisation's disability network, and there is information about the cross-Civil Service disability networks on the Civil Service equality and diversity page.
Comment by Mitch James PT Ops posted on
Really great article raising awareness of hidden disabilities, I'm also in the same positon, have numerous hidden health conditions, people always say to me there is nothing wrong with me you look so healthy,. It can get very frustrating. I wish you both well with your treatments. Having cancer and surviving several strokes make you stronger.
Comment by Emma Moger-Smith posted on
Mitch,
I am sorry to learn that you are experiencing a number of health issues and I know how frustrating it can be when people do not look beyond physical appearance. So I am hoping this blog will get the message across that the majority of things people have to deal with on a daily basis are invisible, whether a health condition, disability, caring commitments, etc.
I too can say with certainty that dealing with conditions such as these does make you a stronger person.
Take good care,
Emma
Comment by Mitch James PT Ops posted on
Thank you Emma, I agree this blog will help challenge ideas across the board on hidden disabilities.
Comment by Madonna posted on
Really interesting article, I hope more line managers are aware of the adjustments that can be made for their staff with autoimmune diseases.
Comment by Emma Moger-Smith posted on
Madonna,
I really hope that people who are line managers do take the time to read blogs like these and also attend training and awareness sessions that will help get these messages across. They can then also learn from steps that other managers have taken to support their employees. Please share this to spread the word.
Thank you for your support.
Emma
Comment by Janet Davison posted on
I was diagnosed with Rheumatoid Arthritis about 18 months ago, it's a condition where your immune system attacks your joints and it is managed by taking immuno-suppressants.
When I was first diagnosed, I honestly thought that I would have to leave work because I was really stuggling to move around, but I had no idea at that time how effective the drugs are nowadays.
I also knew that I was struggling emotionally so I arranged to have some counselliing and it turned out to be a smart move. It gave me tools to fight on through the difficult first months, post-diagnosis, until I found the right medication.
Although it is getting more managable day-by-day and my joints aren't as painful, I still have to deal with the crippling fatigue, and there is no medication that can help with that.
Respect to all those who cope with an invisible illness!
Comment by Maria posted on
Hi Janet I also have Rheumatoid Arthritis (16 years) and fatigue is now a thing of the past for me, thank God, as it is the symptom that I found most unbearable. I had to try a number of drugs before we found the right one for me and once I did the fatigue just evaporated. So don't lose hope, some drugs do work on the fatigue too. Wishing you all the best.
Comment by Lynsey Murray posted on
Hi Janet
I have this too and the fatigue is the worst symptom for me, there is no substitute for rest. Something that transformed my general health was having a day off in the week, it really makes a difference to what I am able to do. I would recommend exploring whether a change in working pattern (if possible) can help you manage your symptoms.
Comment by Emma Moger-Smith posted on
Great advice ladies. I am really pleased to hear how supportive work have been and how you have now found things that work for you. Not giving up is definitely the right attitude to have 🙂
Comment by Laura Mapstone posted on
Afternoon all,
A really interesting blog and comments. I have diagnoses of both Type 2 Diabetes and Rheumatoid Arthritis, but both conditions have been in remission for a number of years, allowing me to live drug free. I achieved this by going low carb - the NHS recently launched a low carb app, which you can find in their App Library. I looked at the work of Dr Wahls, who achieved great results with her MS by changing diet and is now conducting clinical trials; Dr Fasano whose work was relevant to Rheumatoid Arthritis; and Dr Unwin, an NHS obesity and Diabetes Champion.
I kept taking my medication until my care team and GP agreed that I no longer required it.
As a result of the changes I have made, I am now pain and fatigue free from my conditions, and I am in fact regaining some of the strength that I lost, making me a very happy person. This method may not work for everyone, but as the Dietdoctor website shows, it works for many.
Worth a look to see if something so simple can help anyone else reading this blog!
Comment by Emma Moger-Smith posted on
Wow Laura, that is a really amazing story and something that I would certainly be interested looking into.
Have you ever thought about doing your own blog to tell others what and how you made this changes and how the results of those changes presented themselves as I think people with autoimmune conditions would be very interested to look into this given the positive results it has had on your your way of life. You could even link it to this blog!
Thanks again for commenting and increasing awareness that diet can have tremendous benefits.
Stay well!
Best wishes,
Emma
Comment by Glenda Tudor-Ward posted on
Hi, I'm glad you mentioned diet and MS as many people have had success by making/including diet and lifestyle changes.
In addition to the ones you list, OMS is an evidence based program put together by Prof Jelenik (who has MS himself). All information is available online for free in an understandable format, with research clearly documented and explained.
Best wishes
Comment by Emma Moger-Smith posted on
Janet,
Thanks for your comment and I am sorry to learn of your recent diagnosis. It is good to hear that you have been seeking support through counselling to deal with early diagnosis and there are an awful lot of charities out there that can help with this or sign post you to the right support.
Yes fatigue is a biggy and unfortunately, as you point out, there is no medication for that. I have been drinking aloe vera juice every morning and I have found that has really helped me increase my energy levels. After all, aloe vera is the healing plant 🙂 It's really difficult managing the fatigue with work, but I have just learnt to give in to it as if you are feeling that way, your body is telling you that you need to rest. I have found that if I have fought on then I have ended up having a relapse. Work are content with me working flexible hours so that I can take breaks when I need to rest.
Take good care,
Emma
Comment by Robert Wagener posted on
I have type 1 diabetes, another autoimmune disease. I've felt ill for very long periods over the years, as it's often very hard to throw off viruses and this exposes you then to contracting other illnesses. I've found it very hard and frustrating at times, as I often think I'm getting better, only to be confronted with another wave of acute malaise that lays me up again.
I think it's people understanding this, particularly your nearest and dearest, that helps you get through these times; that, and the fortitude and determination you develop to get you through the hardest times. I've got total respect for people with these horrible invisible issues.
Comment by Emma Moger-Smith posted on
Robert,
Your words are so true and yes, I too could not have not got through the last couple of years without the support from my friends, family and also my colleagues at work.
I think the difficulty is not knowing how you are going to be from one day to the next and actually you just have to take each day as it comes. That is really hard for someone who likes to plan a lot (I am a planner), but I have just had to change my approach.
A lot of how well you cope also depends on the time of person you are and whether you are going to sit back and let it take control of your life or you are going to take the control as best you can.
Take good care,
Emma
Comment by Paul Wade posted on
It's great to see an article increasing awareness of these conditions. My wife has Connective Tissue disease and, now, suspected Scleroderma. It took over 3 years for her to get her initial diagnosis as 'problems' with different parts of her body were referred to different consultants; Eyes to Opthalmology, Skin & Hair to Dermatology, Digestive System to Gastroenterology, reproductive system to Gynaecology, Heart & Blood vessels to Cardiology, and, by the time she went to see the relevant consultant, the 'problem' wasn't as severe or its cause couldn't be identified.
Connective Tissue disease comes under Rheumatology and, if she hadn't done her own research, and demanded to see them she probably wouldn't have been diagnosed (it took them over a year to diagnose her).
Despite medication, she is unable to work due to the number of hospital appointments she has and the fact our 3 children also have health issues (eldest suspected Connective Tissue & diagnosed PoTS, middle Coeliac and youngest Autism, Dyspraxia & Sensory Processing Disorder).
Comment by Emma Moger-Smith posted on
Paul,
Many thanks for your response. I am so sorry to learn of your wife's condition and the very long journey she has had to go through in order to get a final diagnosis. Unfortunately I have heard this many times before and I feel very lucky to have been diagnosed so quickly. I think it's the really complex nature of these conditions and the fact that they do affect a number of different areas of the body that makes diagnosis so tricky. There isn't someone in the medical profession who can look holistically across the piece and join the dots as the consultants only specialise in their own areas.
I am sorry to learn that your wife is unable to work due to the commitments she has for managing her own welfare as well as that of your children. I hope you continue to get the support that you need Paul as well.
My very best wishes,
Emma
Comment by Paul Wade posted on
Emma,
thanks for your kind wishes. I agree that it is the complexity of the conditions, together with the fact 'flare ups' come and go that make diagnosis more difficult.
Fortunately for us we can manage on my earnings and I must say work have been very understanding and flexible with me. It's one of the reasons I have stayed with the Civil Service all these years (24 in March).
My wife is a member of a number of Lupus groups (North West UK and on Facebook) and has found a lot of support and help from these.
Comment by Emma Moger-Smith posted on
Paul,
Yes, it is certainly one of the many benefits of working in the civil service as they are also very supportive to those that are caring for people with disability and health conditions. I too have remained with the civil service for that reason.
May you and your family continue getting the support that you need. My very best wishes to you and your family.
Emma
Comment by Rossana Roby posted on
Hi guys
My disability is very similar to Emma's. I started with pins and needles in my hands and feet in December 2011, and a few days later I was paralysed from the neck down and in a great deal of pain. I spent nine weeks in hospital.
My condition is autoimmune too. It's called Guillain-Barre Syndrome and is quite rare. My immune system targets the myelin sheath that surrounds the nerves, which is why I have a lot of pain. There is no cure.
I have been on a lot of medication since, including oxycontin which is an opiate. I stopped taking it as I wasn't able to function properly wih it. When I came back to work almost six months later, everyone said it was too soon, but I believe it helped me get to where I am now.
I have to get taxi's to work as I can't use public transport due to weakness in my arms, and because of fatigue I only work four days a week with a day off in the middle.
I am thankful I can do that and also for the support I get from my colleagues. I think coming back to work made me stronger.
Well don Emma and Theresa
Comment by Debbie posted on
Rossana
Thank you for mentioning GBS, its not that well known and I know just how much of an impact this can have on people.
Comment by Emma Moger-Smith posted on
Hi Rossana,
Many thanks for your comment and for speaking out about your condition, which is one that I have never heard of, but has real similarities to MS.
I really do know how it feels to take medication that helps to dull down the symptoms, but then the side effects of this makes it hard to function and therefore you have to strike that balance. It has taken me quite a long time to get there, but I believe I have now (touch wood).
I am really pleased to hear that access to work have supported you and you have found that coming to work the right number of days for you has made you stronger and kept you going. I really do find that having that purpose gives you something to strive for and that's why I love working for the civil service as you are helping others with the services we provide or are putting in place.
My very best wishes to you.
Emma
Comment by Christine Deal posted on
Hello
As a fellow MS suffer it was lovely to ready your stories. I have had MS for more years than I can remember (I am that old). I think problems started following a horse riding accident resulting in a ruptured spleen which weakened my immune system and the MS happened a few years later.
It can be a very daunting and scary prospect living with an invisible disability, but with the right care and support it can be very easily managed. I am encouraged to see shops now putting on Disabled Toilets "Not all disabilities are visible" which makes me feel a bit better and less of a fraud.
Keep fighting and as they say in Galaxy Quest "Never give up Never surrender"
Continued health to you.
Christine
Comment by Emma Moger-Smith posted on
Hi Christine,
Many thanks for you response and I am sorry to learn that you also suffer from MS. When I asked if my fall at the park triggered my MS, the medical staff said no and it was just a coincidence, but I have heard so many stories, like yours, where the MS seems to have been triggered to produce noticeable symptoms after an accident or fall. I too have had MS for years, but just not known about it. Although on reflection I have always suffered from fatigue and on my brain scan a number of 'old' lesions were present.
I do still think that the problem we face with these conditions is that they are invisible and it is through blogs like these that really does help raise awareness and make people think before questioning why someone may need certain reasonable adjustments.
Thank you for your support with this and through speaking out we can help spread the word.
Best wishes,
Emma
Comment by Madonna posted on
Hi Emma, this article really warmed me heart, as a Lupus sufferer I have had some not so supportive managers and knowing there are caring employers out there makes all the difference. I'd love to speak with you, when ever you're less busy.
Comment by Donna Bouchard posted on
As a fellow MS sufferer I totally understand where you are coming from. I was diagnosed 13 years ago, four months after I had my Son. I was diagnosed fairly young at 23 and at first thought my life was over - I was completely paralysed down my left side but after physio and steroids I gradually found that the majority of the feeling came back and I decided not to let my illness get me down, I have had quite a few more relapses since then and have now decided to stop worrying and take each day as it comes. My current manager is extremely supportive and am thankful to have her 🙂