Today marks 15 years of having the condition M.E/CFS. My life as an ill person started when I was just 9 years old with a common cold. I never fully recovered. On February the 16th 2000 I got a terrible cold and was really unwell with it for 3 days. I was off school because I had no energy and a constant headache. This continued, long after the cold had gone and I was left feeling ill, tired, achy and confused for weeks. After 3 months I returned to school and everyone thought I was fine. I’ll discuss the ins and outs of what happened between then and now in far more detail at a later point but for now I want to focus on what it’s been like to grow up being unwell. To grow up being different. It’s very difficult to look back on my life of 24 years and realise that almost two thirds of it has been spent at least partially under the thumb of a relentless condition that even now, many doctors still don’t believe exists.
The way we diagnose and categorise M.E has changed significantly since I was originally diagnosed when I was 10 by an M.E specialist in London. When I was diagnosed it was classed as a mental illness, huge amounts of stigma were attached to the condition and I was regularly accused of faking it and making it up by children and adults around me. I was told I was lazy, school phobic, skiving, attention-seeking, fabricating symptoms and imagining or willing myself to not be able to do things. These sound like things that children would say in the playground, and they were, but much more damagingly they were said to me by adults too. Adults who I respected and looked up to, who’d often known me my whole life, who now thought I was capable of imagining a condition and lying about it just to skip school. M.E is now widely recognised as a neurological condition and research is increasingly showing that there are significant biological changes in people like me who have the condition. As yet, there is no known cause, treatment plan or cure. We’re diagnosed by process of elimination and have to undergo months of testing to have everything else ruled out – everything treatable, everything that goes away within a few months, everything curable. Until you’re left with one diagnosis – M.E.
There isn’t even a consensus on what my condition should be called. I was diagnosed with M.E by an M.E specialist but what the M and the E stand for has changed since then. The M is Myalgic meaning muscle pain. The E used to be Encephalomyelitis meaning brain, spinal cord inflammation and is now Encephalopathy meaning disorder/disease of the brain. Many doctors prefer to use the term CFS – Chronic Fatigue Syndrome. I personally hate this label and I know many other M.E sufferers do too. While fatigue is the symptom that binds all of us sufferers together, it’s by no means the only symptom. If you tell someone that you have CFS it almost always elicits the response “Oh I’m tired all the time” or “I’m chronically fatigued” followed by “maybe I’ve got CFS too” and then usually laughter. Over the last two weeks there has been a proposal by the US Institute of Medicine that the name should be changed again to try to encompass the fact that the condition does exist and causes patients real, severe and very long-lasting symptoms. The proposed name is SEID – Systemic Exertion Intolerance Disease. I think it’s great that health departments are finally trying to give credibility to this misunderstood and hugely judged illness but I can just imagine the comments now: “Oh maybe I’ve got that, I hate going to the gym”, “What a great excuse to not have to do P.E or do exercise, maybe I’ll say I’ve got that” or other such hilarious trivialisations. 15 years of my life has been affected by this condition but people still feel it’s appropriate to joke about it so they can skip the gym without feeling guilty.
When I was 13 my condition got so bad that I spent 3 years using a wheelchair without which I was a prisoner in my own home. I had to choose between walking around or going to school and sitting in a lesson learning something because I didn’t have the energy to do both. I was bullied for months by so many people at my school for using a wheelchair. They all knew I was physically able to walk and not paralysed which to many of them meant I was “faking it” which I was regularly told to my face and behind my back and even had a Christmas carol made up about me by a group of girls. There were two of us at my school who used wheelchairs, I was known as “the one that can walk”. People I’d made friends with stopped speaking to me when I came back to school in a wheelchair, one particularly cruel girl who had visited me during one of my sickest weeks went back to school and told my whole class that I’d admitted I was faking it and said that we’d spent hours playing football in my garden and that everyone should stay away from me because M.E was contagious. The week she had visited I’d been physically unable to walk because my legs would not bear my own weight. I couldn’t shower and could only bathe once or twice a week with my mum having to help me in and out of the bath and washing my hair for me. I was 13 years old and completely reliant on my mum when I should have been gaining independence and going out shopping with my mates and meeting my first boyfriend. That girl’s lies caused me to be ostracised by almost everyone in my teaching group and it wasn’t until months later that I found out what she’d said or I’d have put them right.
Despite being intelligent and near the top of my class when I was at primary school, nothing came easily to me once I got M.E. One of the most devastating symptoms, even more debilitating than the physical pain, aching and fatigue is brain fog. It’s also the one symptom that never leaves me even when I’m at 95% functioning. Brain fog feels like your mind is wading through treacle. Everything is more effort – thinking, listening, talking, answering a question, telling a story, thinking of words, concentrating, remembering, recalling, even recognising. Brain fog means that despite being able to read the local newspaper by the time I started school, I often go for months at a time being unable to read a book because I can’t concentrate hard enough, focus enough on the words on the page, comprehend what I’m reading, or remember names or plot lines. When I’m stressed the brain fog gets worse and is noticeable in conversations people have with me particularly if I’m put on the spot. My mind goes blank, I’m unable to comprehend the question or I lose the ability to construct an argument. This has meant that school exams and job interviews have been really hard for me because I lose the ability to express myself properly. I can’t keep enough information in my head at once to be able to proof read an essay from beginning to end and know that it makes sense so almost everything I wrote for my degree and have written since has to be proof read by someone else because I simply don’t have the skills to do it unless I’m having a really good day.
Despite all of these things, I’ve never given up fighting to get to where I wanted to get to. I’m one of the most determined and motivated people that you’ll ever meet and with good reason, I’ve had to be! When I was told that I would have to repeat my final year of secondary school in order to gain enough GCSE’s to get into college I made sure that no matter how ill it might make me, I’d get my 5 A*-C grades in 1 year just like my friends would and I did. I even got a 6th for good measure. At college my health really deteriorated after the first term and I spent 6 weeks pretty much in bed. I was advised in my second year that I’d have to drop one of my three subjects because I had under 50% attendance and was badly failing. I refused to drop it and told them to give me a chance and I pushed myself really hard and by the end of the year had got my attendance up to 73% and managed to get an E (not a good grade but I passed despite being assured I would fail). Going to university had always been something I’d wanted to do growing up but it never seemed like a feasible option when I badly relapsed every year for the first 8 years of having M.E. I applied to universities close to home so I could commute and not have to deal with moving out as well as making friends and coping with the workload. I was rejected by all of the universities within an hour’s train ride from me so I braved it and looked further afield. I moved to Cambridge following my gap year and enrolled at Anglia Ruskin University to study Psychology. I don’t think I ever believed that I’d get through it but I had to try because I couldn’t get my career in mental health without having at least a 2:1 in a psychology degree. I somehow managed to get myself through it and didn’t just scrape a 2:1, I was just 0.25% away from getting a First! I was in complete disbelief when I found out my results and I can still feel the pride and aching in my cheeks from grinning ear to ear all day when I graduated. I even went back to dancing after 3 years of using a wheelchair and took my Grade 7 and Grade 8 ballet exams achieving Distinction in both.
Many of the mental health issues I have now are because I was so doubted and misunderstood when I most needed to be supported and believed. We’re so quick to judge or advise or make suggestions about how another person could handle things differently or “better” but in doing so we often isolate that person and make them feel that they are failing in some way and should be coping better. I certainly felt that I was failing while I was growing up. I was regularly told I should be grateful that I wasn’t terminally ill or paralysed and told to just smile and “think positively”. What people didn’t seem to see was that I felt like I was drowning and I gave up most of my childhood to the M.E and I wasn’t great at just grinning and bearing it! I now surround myself with people who trust me and know that I’m doing what I think is right and what I think is best for me to make the quickest and best recovery possible. They’re just there for me, offering encouragement when I need it, support and understanding and cheer me up whenever I need a good laugh.
15 years is a long time to share your life with a condition that is still so widely ignored, misunderstood and stigmatised. After too many years of being expected to listen to others’ opinions of me, I’m trying to stand up for myself and through this blog I have a voice. I’m not being ignored anymore and 15 years on from when I started this journey I’m now going to be me with M.E (and a whole heap of other conditions), at least until I can be just me.
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