Myalgic Encephalomyelitis

Now You See ME

This week is ME Awareness Week and today is ME Awareness Day so I’m here to raise awareness of the condition that I’ve suffered from for 15 years, since I was 9 years old. ME is hugely misunderstood, judged and stigmatised and so much more research needs to be done so that people like me can hopefully one day be cured. You can read more about my personal journey here.

ME is often dismissed, discounted, diminished and ignored. People pass it off as a non-serious condition that is preferable to many other diagnoses but recently it has come to light that many people who have other, arguably more serious conditions, would rather have those than ME because of the lack of understanding and treatment. When you’re diagnosed with MS people believe you, they have sympathy for you and don’t tell you try harder. With arthritis they’re aware that they may not be able to see the pain, but nevertheless if you say things hurt, there’s no need to question it. If you’re diabetic and you say you feel faint because your blood glucose levels have changed, people will do what they can to help. With ME you’re regularly questioned, tested, pushed, encouraged and often bullied. You constantly feel like you have to prove yourself and prove that you are as ill as you’re saying you are. Many people think we’re lazy, or just need to try harder but actually ME mostly affects people with a Type A personality who are extremely motivated and determined and it often takes us years to adapt to the condition and finally learn to pace ourselves so that we don’t constantly relapse.

Many people think that we’re making it up but I can promise you that we’re not. No one in their right mind would make up a condition like this and stick with the lie year on year while their life and opportunities pass them by. Anyone that knows me will tell you that I’m one of the most motivated and determined people they’ve ever met. They’re shocked that despite all of the excuses I could’ve made because of my condition that I still attended school, college and university as much as I could and got as many qualifications as possible, against the guidance of doctors and teachers. I’ve never used my condition as an excuse to perform at a lower level than I’d have expected of myself if I was well and everyone I’ve ever met with ME is the same.

This condition robs people of their lives. It takes away years and often decades and many of us never fully recover. People diminish it and suggest that we’re “just a bit tired” and that “everyone feels like that” and often then go on to joke that “maybe I’ve got ME”. We’re often dismissed when saying how bad we feel and are told “well no one ever died of ME” but that’s now known to be untrue. People have and are dying of it. It’s very rare but in the most severe cases people are dying of ME and having it listed as their sole cause of death on their death certificates. In those cases, their spinal cords are inflamed, their organs are failing and their bodies deteriorate with every new stimulus. So little is known about this condition and while promising studies are published every year suggesting a newly found cause, treatment or cure, nothing ever seems to come to fruition and help the masses. We still don’t know the cause or even if everyone with a diagnosis of ME has the same condition. In my view, it’s almost certainly a cluster of similar conditions that vary in severity and symptom-type and probably vary in cause and therefore treatment too. There are no treatments that help the majority and there is currently no known cure. There is no accurate prognosis because the condition varies so much from affecting some mildly for a couple of years and them making a full lifelong recovery, to those who are bed bound and hospitalised who eventually die, and everything in between. There is no blood test that can be used to confirm ME and diagnosis is still made through a process of elimination meaning there is a high likelihood that ME is indeed a cluster of conditions all of which have currently unknown causes.

Our condition is invisible to all but those closest to us. If you met me in the street you wouldn’t know that I have ME, you wouldn’t see the pain in my joints or the insomnia that keeps me awake til the early hours. You wouldn’t see the nausea, the headaches, the constant aching, the brain fog. No, unless you live with me, you’ll never see my condition. Even when I was wheelchair-bound I was accused of faking it because I could still walk short distances or I “didn’t look that sick”. Those closest to me can see the subtle changes and know all too well the white-grey colour my skin goes when the fatigue hits, the yellowish tinge I get when I’ve overdone it, the dark grey circles under my eyes that last for months at a time thanks to not remembering the last time I got a decent night’s sleep. Unless you look closely you won’t notice the tremor I’ve had in my hands since I was 15, or the fact that my legs feel like lead if I stand up for too long without moving, or my eyes glazing over when my brain is simply too tired to comprehend anything anymore. You can’t see my condition, but it doesn’t mean it’s not there and it doesn’t mean it’s not real.

Invisible illnesses are everywhere you look and often those of us with them are hidden away because we’re too ill to function outside our homes but when you see us on a good day and managing to smile, enjoy ourselves and have a rare day out, please don’t question us or assume that we’re making it up. You don’t know what it’s taken for us to be able to go out that day, the time we’ve spent resting, the help we had to have beforehand, the days afterwards that we may spend in bed because we’re so burnt out. The nature of ME means that we often pay the price for overdoing it a couple of days later so we’re forever doing too much without realising because our bodies don’t react immediately. This means we can do far far too much and then pay for it for days, weeks or even months afterwards. You may think we’re faking being sick but what we’re actually really good at is faking being well. We’re pro’s at putting on a happy face and ignoring the pain and fatigue and fighting our way through it so that we can attend important events, write that last essay or just be reminded of what doing normal things feels like. But you won’t see us when we relapse, when our legs give up and we have to crawl because they simply won’t hold our weight, when we have to be helped to bathe because our arms aren’t strong enough to wash or brush our hair, or the fatigue is so bad that we no longer have the energy to cry. You don’t see us when we need help getting dressed, or have to sleep in the lounge because we can’t climb the stairs, or those who are sickest who are hospitalised for months at a time and tube fed in blacked out rooms because all stimuli causes them physical pain. ME is not “just feeling tired”, it’s a cruel condition that is utterly debilitating and it needs so much more research to be done so that a cure can finally be found.

You may not be able to see my condition but I hope that Now You See ME.

15 Years of Trying to be Me with M.E

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.

For more information please visit the following links:

http://www.scientificamerican.com/article/chronic-fatigue-syndrome-gets-controversial-redefinition/

http://www.meassociation.org.uk/about/what-is-mecfs/

http://www.ayme.org.uk/symptoms