ME Awareness Week takes place every May. ME or myalgic encephalomelitis which is also called chronic fatigue syndrome (CFS) is a long term condition which encompasses a wide range of symptoms. You can learn more about the condition by visiting the ME Association’s website here. Hannah, a member of the Equality, Diversity & Inclusion team here at King’s has take the opportunity to share her own experience of ME.
Imagine one day getting ill, something that feels a bit like the flu. You rest, you drink your fluids, you take your paracetamol. But days, then weeks go by and you never get better.
May 8th – 15th marks ME/CFS awareness week: This disease affects around a quarter of a million people in the UK and I am one of them. This Easter marked 7 years since I first developed symptoms and began a rollercoaster of losing what felt like my entire self before starting to rebuild a new person.
It is often described as an invisible illness, both in terms of symptoms and our physical presence in the outside world. We look normal because you see us on our good days – the rest of the time we can’t leave the house. We seem functional because it is a fluctuating ‘boom/bust’ illness, and busts tend to happen in private.
The ME Association summarises ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) as “a complex, chronic medical condition affecting multiple body systems”. With a wide range of symptoms and severities, no two cases are fully alike, but if you fancy knowing a bit more about my experience, keep reading!
The Day to Day: Bad Days
On bad days I cannot stay upright for very long. I have to lie down constantly; my head is so foggy I speak at a snail’s pace; I can’t remember what happened a moment ago; my face feels numb (I can only describe it as feeling like I am wearing my own face); my face and neck are nauseatingly hot whilst my hands are ice; I have headaches; I feel sick; I can’t concentrate; lights are too bright and noises are too loud – watching tv is too much.
These periods of ‘relapse’ or ‘crashes’ can be pretty tearful because I wonder what my life is now. Even though I know bad days don’t last forever, who knows how long this one will last? I feel overwhelmed by the tiniest tasks or changes in plans because I’m worried about making myself worse. On really bad days I can barely walk without dizziness and vomiting. I sleep for hours and it does not fix anything.
The Day to Day: Good Days
On good days I feel freer, less in the grips of my illness. I get quite a lot done; I get out and about; I cook exciting things for myself and people I love. On good days I feel like I am on top of things; my house is a little more organised and so is my brain. I spend time with people I love; I feel like I can manage my symptoms. I do exercise and have hobbies. I do not lose days on end to resting. I do not feel like I am walking through treacle.
On good days I may do more than one thing or get the most out of the one thing I do. I make smart decisions that mean I haven’t over done it for the next day. I am helpful and can take care of myself. I feel capable and smart and like a whole human being and the future looks bright.
The biggest challenge I have won with ME is probably with my own head.
At my lowest I felt like I wasn’t a whole person anymore, grieving for the life I had lost. With no cure or treatment and very little bio-medical research, I felt anxious and depressed about my body not following the rules and not understanding why. I tried to push through things for years and was constantly burnt out.
After CBT and an NHS support course, I felt a lot more informed about my symptoms but also this helped me get better at being kind to myself and allowing myself time to be ill and to recover. Not being angry at myself when all I can do is lie down and stare into space, not being so frustrated when I have to go home long before the party is over. Reminding myself that my hobbies (which I am not always well enough to participate in) are for fun and not to prove something to someone.
I don’t think society acknowledges or encourages the strength of conviction it takes to rest instead of push on – “Push through and it will be fine” or “well done for you getting your head down and just carrying on” are far more common narratives.
I’m learning to make my own way though, and although I still make mistakes, still have relapses and still get upset, I am doing okay. I have some wonderful people around me who give me so much love, and I’m learning to be someone who treats myself with kindness too.
Things I wish people knew
I wish people knew that I quite often feel terrible even when I look fine because my body’s response to feeling terrible is to pump me full of adrenaline as some sort of survival response. Saying “Oh you don’t look ill” is not the helpful encouragement or compliment that people may think it is.
I wish people knew that I’m not always smart about this… sometimes I make decisions based on my heart rather than my body. I often feel high enough on adrenaline to forget I’m ill for a bit but it just means that I forget to call it a day early enough and end up crashing even harder. I wish people knew that I often forget to self-regulate and so sometimes could do with a reminder.
I wish people knew that sitting at a cafe chatting is not the same as resting, that sitting on a sofa chatting is not the same as resting, that sitting watching tv is not the same as resting. That when your mitochondria aren’t functioning and your adrenal system is a mess, even SLEEPING isn’t the same as resting.
I wish people knew that currently there is no cure, or even medical treatment, only symptoms management strategies.
I wish people knew I would like empathy over sympathy. I wish people knew you can believe someone about their experience without fully understanding it.
I wish people knew how much their support and listening means to me. It has kept me feeling human through the worst times.
What I’ve learned
My advice to other spoonies (a term for people with chronic pain or illness – see the origins here) is to ask for help, to communicate and to be kind to yourself.
The times when I have felt the worst and the path in front of me has seemed impossible, expressing this to those closest to me made a massive difference. The amazing people around me, as it turns out, want to support me and make sure I am okay, rather than wanting me to run myself into the ground.
Communication has meant I do not feel alone, whether that means talking to my closest loved ones or ME support networks. I have learnt so much through this journey and I have those around me to thank. Asking for help has meant that when it seemed impossible to face things alone, I didn’t have to. Easing off on the pressure I put on myself to be a fully functioning human, saying it’s okay to eat toast and stare off into space sometimes. Me putting my health before my career and not feeling bad about it has made a world of difference!
It doesn’t make you weak to be part of a team. Make sure you are on Team You as well!
The sky is the limit:
I have still achieved a lot since being ill – I have consolidated my teaching skills, taken up (and paused) sports, fallen in love, bought and helped do up a flat, moved in, changed career and learnt a whole lot about chronic illness management.
At times, my next steps, goals and aspirations have felt fuzzy or unattainable. My goals for the next 10 years are pretty different now than they were 7 years ago. I still want to change the world for the better, I still want to lead and be involved in change. But I have to figure out some way to make that feasible whilst keeping myself happy and healthy. These days I know it’s okay to still aspire though, and to start putting wheels into motion.
What next for the future of ME/CFS? For a long time, ME/CFS has been little understood, and despite the large demographics it affects, historically there has been less than £1 of government funding per person per year for bio-medical research. However, in the wake of the massive surge of post-viral fatigue and symptoms after Covid 19, there is a little hope in our community that medical interest may begin to focus more on these types of illnesses. In the meantime, we hope that awareness at least will spread, and with that, understanding, empathy and adjustment.
If you are looking for any more insight into life with ME/CFS, you can learn a lot:
ME is just one of so many hidden disabilities and illnesses the affect so many people around us. Please keep listening.
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