https://civilservice.blog.gov.uk/2019/01/11/personal-disability-stories-part-8-emma-and-thereses-stories/

Personal disability stories: Part 8 – Emma and Therese's stories

 

Portrait images of Emma and Therese, who both have autoimmune conditions

Happy New Year to all my readers.

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 pictured with her son
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 pictured with her daughter
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.

To learn more about disability at work you can complete some or all of the Becoming Disability Confident e-learning, or find out more about particular conditions through charities such as Lupus UK, The MS Society, and through the NHS website.

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.

30 comments

  1. 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

    Reply
    • Replies to Christine Deal>

      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

      Reply
  2. 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

    Reply
    • Replies to Rossana Roby>

      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.

      Reply
    • Replies to Rossana Roby>

      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

      Reply
  3. 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).

    Reply
    • Replies to Paul Wade>

      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

      Reply
      • Replies to Emma Moger-Smith>

        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.

        Reply
        • Replies to Paul Wade>

          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

          Reply
  4. 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.

    Reply
    • Replies to Robert Wagener>

      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

      Reply
  5. 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!

    Reply
    • Replies to Janet Davison>

      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.

      Reply
    • Replies to Janet Davison>

      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.

      Reply
      • Replies to Lynsey Murray>

        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 🙂

        Reply
      • Replies to Lynsey Murray>

        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!

        Reply
        • Replies to Laura Mapstone>

          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

          Reply
    • Replies to Janet Davison>

      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

      Reply
  6. 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.

    Reply
    • Replies to Madonna>

      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

      Reply
  7. 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.

    Reply
    • Replies to Mitch James PT Ops>

      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

      Reply
      • Replies to Emma Moger-Smith>

        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.

        Reply
  8. 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.

    Reply
  9. 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.

    Reply
    • Replies to Cat Macaulay>

      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

      Reply
  10. 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.

    Reply
  11. 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

    Reply
  12. 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.

    Reply
    • Replies to Jane H>

      Comment by Emma Moger-Smith posted on

      Many thanks Jane, that is great to hear. Hoping more people will take your lead.

      Emma

      Reply

Leave a comment

We only ask for your email address so we know you're a real person