In January, I shared Emma’s and Therese’s stories of having an autoimmune condition. This struck a chord with many readers and generated lots of comments.
One such reader is Royal Navy Commander Kay Hallsworth, who has kindly been in contact to share her story of working in the Armed Forces whilst living with Myalgic Encephalomyelitis (ME).
ME, sometimes known as Chronic Fatigue Syndrome, is a long-term, fluctuating neurological condition that affects many body systems, including the nervous and immune systems. The most common symptom is tiredness, but people with ME can also experience a range of symptoms, and relapses that can impact on everyday activities.
It is estimated that 250,000 people in the UK and 17 million people globally are affected by ME.
I will let Kay explain how the condition has affected her, the coping strategies that she has adopted, and the support that she has found helpful.
Kay’s story
I have never considered myself to be disabled. Having been in the Royal Navy for nearly 27 years and progressed from a student nurse to a Commander, how could I be?
Initial diagnosis
22 years ago I was diagnosed with Myalgic Encephalomyelitis (ME), sometimes called chronic fatigue syndrome (CFS), yuppie flu, or post-viral fatigue syndrome (PVFS).
A commonly misunderstood condition, it was first identified in 1956. It is distinguished by muscle fatigability after minimal exertion; neurological symptoms, especially affecting cognitive, autonomic, and sensory functions; and is characterised by fluctuating symptoms, with a tendency to become chronic over time.
My case has always been mild. I work full-time but live daily with symptoms including chronic pain, muscle fatigue and cognitive impairment. Current research suggests a probable immune response that causes a metabolic change, so people with ME tend to function anaerobically as opposed to aerobically. This means that I live with almost constant ‘lactic burn’. Some types of exercise can be detrimental if not done the right way – I am, by necessity, more yoga than parkrun!
Managing my condition
I have always had exceptional support through Defence Medical Services.
There is no definitive treatment or cure for ME. The most effective way of managing it is through pacing, to prevent a ‘crash’ or ‘flare’. Some people use a spoons analogy, where each spoon is energy for a task. It works well for understanding pacing, but I prefer Energy Envelope Theory, where you consider the total amount of energy you have as a set package. I have learnt how to do this well enough to function with most people not realising I am ill.
I also have an extremely supportive husband, who stays at home to look after our children and domestic tasks, allowing me to continue working.
Relapses
I have had two bad relapses since my first diagnosis, both brought about by situations that removed my control over my pacing. I am currently on a phased return to work after the second relapse.
The first was brought on by a role change in a new job involving significant people management work. The latest has been harder to cope with. I have been out of a full-time role for longer, and it has left me with more residual effects, and more necessary adaptations to how I manage my life and work. This episode must have started earlier than I realised, but I kept on trying to ‘push through’. This is one of the worst things a person with ME can do, but is a natural response, especially for someone in the military.
Chronic illness and depression
Just before Christmas I was diagnosed with High Functioning Depression and am under the care of the excellent team at DCMH (Departments of Community Mental Health) Portsmouth. An incident 5 years ago may have triggered this, and once again my body has been coping with managing the symptoms alongside my ME.
Many people with chronic illnesses, especially those causing chronic pain, can develop depression. However, in my case, depression was separate and specific to the incident.
Initially, I reacted physically to the increased cortisol levels firing round my body, and I ended up in an early menopause, aged 41. I gained weight, slept only 3 hours each night, and living with my ‘normal’ pain became increasingly difficult. I reached out to my chain of command and medical support, but as I did not know what was making me unwell, I didn’t know how to address it.
Correct diagnosis and rehabilitation
One colleague suggested I wasn’t cut out to be a Commander with my condition. This made my depression worse, and I suffered full-blown anxiety symptoms, barely leaving the house for a couple of months.
Thankfully, my fantastic GP at HMS Excellent, and the team at DMRC (Defence Medical Rehabilitation Centre) Stanford Hall, identified the underlying cause of my relapse. With medication, treatment and a rehabilitation programme, I am now looking at a full-time return to work in the summer.
Some employers would have written me off. The MOD haven’t done that, and the medical and occupational health support has been invaluable. I will never be the person I was. However, I can still bring value to the job I am trained and paid for.
How can line managers and employers help?
It is important that line managers understand their people and offer them the support they need. For me, this means a quieter office where it is easier to pace myself. I am also conscious that ‘coming out’ about living with a chronic medical condition means people may view me differently. However, it may help others appreciate that people are often living with conditions they have no idea about. Compassion and empathy cost nothing, and allowing people to work in an environment best suited to their condition may help them to work better.
I believe that living with additional needs actually makes me more inclusive and compassionate as a leader. We often overlook individuals with complex stories, or focus on what they can’t do rather than their strengths. I try to look at the whole person and consider what is best for them as a member of my team, not what is best for me.
A flexible and inclusive leadership approach allows others to be their whole self at work and to realise their full potential, benefiting both the individual and the organisation.
I am indebted to Kay for her willingness to share her story to help others, and for her honesty, including her concern that, in opening up, others may view her differently. This is a comment I have often heard from disabled colleagues. It tells me that we need to do more to create a supportive environment in which disabled colleagues feel able to talk openly about their disability.
We need more senior disabled role models such as Kay to come forward and let others know that it is okay to talk openly about their disability and to seek the support that they need.
Kay also makes an excellent point about the need for managers and colleagues to show compassion and empathy. Random acts of kindness, such as bringing someone a cup of tea when you can see they are having a bad day, can make a huge difference.
Finally, I would like to give a shout out for ME Awareness Week, from 6 to 12 May. And you can find out more about ME, along with advice and information on available support, on the NHS website or through the ME Association.
17 comments
Comment by S posted on
This is really reassuring to read. I've had CFS/ME for just over 2 years now, and was diagnosed last September, just as I started my first job "post-illness". It's a struggle and I'm having to sacrifice a lot of basic self-care but I can't afford to not be working. I'm still fighting to get PIP, haven't yet been able to access any treatment/specialist services as my diagnosis from Leeds meant nothing when I moved to London, and I'm beng moved to a new role in 2 days and don't yet know where I'm going or what I'll be doing and if I'm even capable of it with this condition. It all feels so overwhelming sometimes! But reading things like this gives me hope that I'll still be able to have a successful and fulfilling career, so thank you so much for sharing!
Comment by Rozanne Kidd posted on
'Compassion and empathy cost nothing' and the MOD colleagues who supported you Kay are to be applauded alongside you for your resilience. Would be fantastic if we can also have your enlightening and important story from one of their perspectives as a role modelling example to others. Thank you for sharing.
Comment by June Armstrong-Pincott posted on
I empathize entirely with what you go through. I cope with daily constant pain with a poor sleeping pattern like yours from Ehlers Danlos Hypermobility. I've also had discriminatory comments/behaviours. My body limitations have decreased in current job, even with the equipment and reasonable adjustments to aid me; I'm no longer capable of certain duties which I find incredibly taxing but I'm still expected to take part in because most days it hurts to hold a full china mug or cutlery - things my able bodied colleagues take for granted. I decided to take early retirement for quality in my life as I know that this will eliminate half the pain I have from the travelling and work. I see retirement as a new phase and my retirement plans are many. My only regret in leaving work is I wish I'd decided to leave 4 years earlier.
Comment by Annette Gillen posted on
What a great open and honest blog. Thank you for sharing Kay. Good luck
Comment by Jo W posted on
This highlights one of the big things about invisible disabilities which is how hard people often work to appear normal or get through the day and how easily these same people can be perceived as lazy despite the enormous amount of effort they put in.
Comment by rebecca posted on
Thank you for sharing your story and for highlighting 'invisible' illnesses. I used to go to our office gym twice a week at dinner time - it wasn't until I came back to my desk one day and I didn't have the strength to move out my chair that I realized there was a problem. The ME diagnosis came soon after, that was 10 years ago. I've struggled over the years but am a lot better now, a reasonable adjustment enables me to work full time - just. The cognitive problems are just the worst. My evenings and weekends are usually spent resting, but I'm lucky enough that my health has improved so that I can so some light exercise at the gym, even some swimming too. There is hope for all CFS/ME sufferers.
Comment by Tracy Jallow posted on
What a great blog that I can empathise with. I live with Antiphospholipid syndrome, one of my most debilitating symptoms is fatigue and tiredness, I'm not lazy, it's a symptom, but I still have a lot to offer. Like you I'm grateful to my employers and management that have shown great support to me enabling me to stay in employment
My full story is in the British Medical Journal
https://www.bmj.com/content/bmj/350/bmj.h1426.full.pdf
Comment by Joanne Payne posted on
Hi Kay, I know how you feel, I suffer with fibromyalgia, which is another very similar condition to ME, I have been suffering with this ongoing since about 15 years. It is very hard to learn how to balance your life, and working as well. My way of coping is to have one week off every five weeks (using leave and Part year) but it is a struggle.
take care and your blog as highlighted the condition
Joanne
Comment by Helen posted on
Thank you for openly sharing your story and opening people's minds to the 'invisible' illnesses. I have Fibromyalgia which is a minefield for people to understand without any obvious physical symptoms. I am lucky that I receive a level of support from my management team but am aware we live in a culture reluctant to provide this, not realising it actually helps such conditions not to have that extra worry and pressure.
Comment by Debbie Pennington posted on
Kay
Thank you for sharing. As you say "Compassion and empathy cost nothing, and allowing people to work in an environment best suited to their condition may help them to work better" We all need to be as kind to each other especially ourselves.
Comment by Janice posted on
I too struggle daily with ME and am now only able to work 3 days a week.
Thank you for highlighting the profound impact it has on a person, and how peoples' perceptions change.
I can actually see the cogs clicking as they tuck me into a different pigeon hole ...
Comment by Ruel Cole posted on
Kay, it is great that you have shared your personal story regarding your disability with lots of people, and I know it has given hope to lots of people within the civil service.
Comment by Lynsey Murray posted on
Thanks Kay for sharing your story and promoting less visible conditions
Comment by G Thomas posted on
Thank you Kay for sharing with us your personal story and the challenges that you have faced. I hope that your blog will increase the level of awareness and understanding.
I would agree with you that the key to success and inclusion is the support offered by Line Managers and colleagues. Unfortunately, I am aware that not everyone is receiving such levels of support nor are being offered the opportunity to have in place reasonable adjustments that would enble them to perform their duties to the best of their abilities!
Comment by Sian Watson posted on
What a brilliant blog and what an inspiration you are Kay. Your resilience is clearly one of your key strengths - did you know that? You are amazing. Your experience shows that there are management teams that are supportive and that they can assist in your career development and recovery when needed. Thank you for sharing your story and I have no doubt you will achieve your goal of getting back to full-time work this summer.
Comment by S Watkin posted on
Thank you for this blog. It gives people a clear account of how the condition can affect and that it doesn't necessarily make you bed bound-therefore people aren't aware of what is actually going on and what an effort iit takes just going through the normal day's activities.
Comment by Mike Moseley posted on
One colleague suggested I wasn’t cut out to be a Commander with my condition. This made my depression worse, and I suffered full-blown anxiety symptoms, barely leaving the house for a couple of months.
It is extremely important that everybody be thoughtful in what and how they say something. A comment like the above is clearly not warranted and could be discriminatory and definitely does not help someone when all they want to do it their job but need help and support.