A Preposterous Diagnosis

When I was first diagnosed with ME, I knew precious little about the disease. I was only aware of one other person who purported to have it, a lady I had known when I was a child. She was not someone I had spent much time with so what little I knew of her illness came through snatches of gossip from mutual friends.

I heard that she’d diagnosed herself in the hope of working fewer hours and claiming benefits instead.

I heard her doctor didn’t believe in ME, that it was a label doctors used to satisfy the need of hypochondriacs to feel that they were special.

I heard it was small wonder she was always so tired given the energy she must waste with her constant complaining.

I heard her symptoms were simply the tiredness everyone has by the end of a long working day, her dietary ‘requirements’ were self-imposed and she’d be sure to feel better if only she’d find herself a boyfriend, take up a hobby or join a gym.

I was too young to know if there was any truth to what I heard but I couldn’t deny that her illness seemed incredibly convenient, providing an airtight excuse for anything she didn’t want to do. She didn’t look ill and I’d see her out and about in town or the supermarket. I knew she went to parties and on day trips with friends. Teenage friends would joke that they’d claim to have her illness too if they thought it would get out of doing paper-rounds or homework.

I never saw her for more than two or three hours at a time and it never crossed my mind that what I saw might be only the tip of the iceberg and not accurately portray what her health was like the rest of the time. Mostly she just seemed needy and a little bit pathetic so when (after months of blackouts and balance problems, muscle pain and migraines) friends began to suggest that I too might have ME, I was genuinely offended they’d dismissed my struggles so lightly.

My assumption was that ME makes you tired. How could anything so inconsequential possibly explain why I was collapsing in the street, waking paralysed in the night or forgetting how to get home along roads that I walked on a daily basis?

When doctors too first suggested that I might have ME, I assumed they were fobbing me off with a meaningless label in the hope I’d be satisfied and not take any more of their time. Only I didn’t want to have a label, I just wanted to be well.

Most people’s reaction to a provisional diagnosis would be to find out as much as they could about the disease but I was so certain the diagnosis was wrong I did no research at all until my doctor asked how I could reject a diagnosis I knew nothing about.

So I began to read about the condition, and the more I read the more I realised just how wrong my assumptions had been.

I read that ME is classified as a neurological disease comparable to MS, chemotherapy, muscular dystrophy or AIDS and that a quarter of all sufferers are bedridden or housebound.

I read that ME affects people of every ethnicity, gender, nationality and socio-economic group including a quarter of a million sufferers in the UK alone.

I read that ME can be diagnosed in children as young as five, and is responsible for more school absences in Britain than any other childhood disease.

I read that people have died, and ARE dying, from this devastating disease and I could hardly believe that the illness I was reading about could be the same condition described in the media as ‘malingering’, ‘school-phobia’ or ‘yuppie flu’. How could something as devastating as the illness I was reading about be so easily dismissed as white middle-class women feeling tired all the time?

I read about blackouts, falls, transient blindness, sleep disturbance, poor temperature control and tender lymph nodes; as much as I wanted the diagnosis to be wrong, virtually all of my symptoms were there. I had thought my sysmptoms were severe but I was shocked to find that I was only at the moderate end of the spectrum. It was hard to imagine how it could possibly get much worse.

It took a long time and a lot of research for me abandon my assumptions and accept the diagnosis. It took even longer for me to lose the shame I felt about telling others I have a disease that is commonly assumed to be psychosomatic. For years I hoped I’d been misdiagnosed and would turn out to have something that doctors could treat, or at least something socially accepted and better understood.

Many patients describe stigma as being the hardest part of living with ME. Many doctors only believed in the illness once they or their loved-ones become personally affected. I know only too well the stereotypes and misconceptions that accompany the diagnosis and I have often wished to turn back the clock and apologise to that childhood acquaintance for listening to ill-informed gossip.

Every callous thing that was said about her has since been said about me and though it angers me to hear such insidious lies I can hardly judge others for the same ignorance that I too once entertained.

I just wish that I could have learned my mistake some easier way.

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This entry was posted in Hidden Disability, Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , . Bookmark the permalink.

21 Responses to A Preposterous Diagnosis

  1. nicolanoo says:

    As I’ve said before, I knew little about ME before I started reading your blog. I thought it was mostly a severe tiredness which made people really, really ill. Thank you for writing your blog ad helping me to become more aware. I’m sorry all those mean things have been said about you. I hope attitudes and awareness levels change one day.

    • Many of the hurtful comments are not deliberately malicious but come from a complete lack of understanding about the disease so it is always heartening to hear that someone is willing to learnabout ME and change their opinions accordingly. So many people once they encounter the stereotypes close their minds to any other evidence you try to share with them so it means a lot when someone is prepared to listen to the truth. Thank you.

  2. Unfortunately, it is up to us as patients to voice out and share with the world just how devastating an illness ME truly is. I love reading your blog, not that I enjoy hearing the impact ME continues to have on you but I love your honesty and your use of limited energy to share the monster of ME with the world. Just think of the many people you help, people who can go to your blog and show loved ones just how cruel of an illness it is. The more people hear, the less prejudiced and ignorant the world will be. Wishing you well today. xx

  3. E. Milo says:

    My god, this brought a tear to my eye. Yes, yes and yes! To everything! I have felt and still feel much of the same things. I am STILL constantly searching for the “correct” diagnosis, but, everything I come up with doesn’t have much in the way of treatments, either, let alone cure. I often think, couldn’t i have learned these lessons in an easier way? No one understands unless they walk in our shoes and i only hope we’ll have enough energy to change awareness and perception.

  4. thebetterwaycfs says:

    Thanks for writing! I know for me, one of the hardest things was being very aware of how I was being percieved with the illness. Sometimes, it was easy for me to go to the supermarket and spend time with friends, and sometimes I couldn’t shower. But nobody saw that part. Looking forward to more posts!

    • I have often wished I had cameras in my home so people could see what the illness is like after the supermarket shop or the coffee with friends when even making a cup of tea or brushing your teeth prove too much to manage.

  5. Yes yes yes! My gosh, I could have written this, I went through exactly the same thoughts and feelings when I was first diagnosed. The invisibility of this illness is cruel. Only those absolutely closest to us actually see what this illness is like and what a little trip to the supermarket does to us. Cameras inside the home is a great idea. A great thought provoking post that I relate to so much. I love reading your blog. You articulate the battle that is having and living with ME/CFS so so well. I’m going to reblog this post on my blog, hope that is okay. Look forward to reading your next post.

  6. Reblogged this on my journey thru M.E. and commented:
    I love reading Sarah’s blog over at Dead Men Don’t Snore. She is a fellow Me/CFS fighter and manages to articulate aspects of this illness that remain hidden from view for most people. Everything she says in this piece I relate to. No one fighting a life changing highly debilitating illness should be subjected to stigma, misunderstanding and ignorance. And yet those of us with ME/CFS still are. Things are improving and have come a long way from the ‘yuppie flu’ of the 1980s but boy is there a long way to go. Please do have a read of Sarah’s post and visit her blog, it is well worth your time and energy. Together we can beat the stigma and the illness.

  7. Joy H Selak says:

    Wonderful blog, it will help raise understanding for those who suffer and those who care about them. Like many chronically ill patients I had several diagnoses, including fibromyalgia. I told people the ones with the most difficult, scientific sounding names, and left out the ones that ended in syndrome. However, I will say that when I accepted all of who I was in this life with illness, I found people were meeting me halfway. The more comfortable I got in the telling, the more comfortable they were in hearing and accepting.

  8. Came over via my journey thru M.E. Powerfully written post! Powerfully.

  9. dawnhosking says:

    I knew nothing about this illness before being diagnosed. Since being diagnosed it is amazing how many others have the same diagnosis. I though that ME was all about feeling tired – until I got it and was seriously ill. Symptoms as you describe along with pain. This is a really good post. Very helpful. 🙂

  10. Julia Hugo Rachel says:

    Love your Blog!

  11. hubertwrites says:

    Oh I’m glad I read this post. I have suffered with Fibromyalgia since early childhood! It has ruined me over and over again. Even today! The craziest thing I am still battling my own self denying it, and still very very ashamed of the Stigma I can taste it in the air when I am around people, and I usually stay fer away from letting anyone come close enough to get to know me that I won’t have to confess and divulge this THING! WHICH no one seems to believe in or know about……I have had a few TBI’s I keep trying to settle there and say it’s the TBI’s and the effect is cumulative, .and geting worse, but I guess I still have to admit Fibromyalgia, and Know that I may never get acceptance, care or love that is not bought and paid for in terms of Professionals, and forget the rest it’s too hard and I have batted Zero since I was a small boy.

  12. kjoy85 says:

    I have fibromyalgia and CFS among other less than visible illnesses. I’ve had fibromyalgia since I was a little girl, but no one other than my mom believed me. I was told that it was “growing pains” and that fibromyalgia only occurred in women in their 40’s. One doctor admitted that I probably had it when I was in my teens, but refused to diagnose me until I turned 18.
    Most people have no clue how severe these kinds of illnesses can be. If people could keep an open mind about invisible illnesses until they do proper research on them, it would make a huge difference on how we are treated by people around us.

  13. Unfortunately, in the USA ME is called “Chronic Fatigue Syndrome”, further adding to its stigma. My dad has had it for many years. I watched him descend into deep depressions because of the things people would say about him. I have Multiple Chemical Sensitivities (MCS), which is very similar to ME. I totally relate to all your comments about people’s attitudes. If ME is viewed as the excuse-for-laziness disease, MCS is viewed as the neurotic-about-chemicals disease. Either way, it’s all in the head, right? There’s almost nothing harder than being dismissed as a malingerer by your friends and family. But as you said, it’s not that hard to understand their attitude. They know nothing about it, just as we once knew nothing. I used to think MCS was “chemophobia” too. How can you blame them? Hopefully gradual, kind education about it will help with the ignorance.

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