The Lost Years by Ruth Rookledge.
I’m 55 this year. I suppose you could call that half a milestone; it certainly seems a lifetime ago that at the age of 17 I walked out of my GP practice with a diagnosis of Glandular Fever.
I have to admit my main concern was that it would mess up my A Levels. I certainly didn’t anticipate the affect it would have on my life.
I was ill for a few weeks, maybe months, and then something happened… I never really got better.
After two or three years I became more and more unwell, painful limbs, extreme exhaustion, sometimes the inability to walk more than a few steps, dizziness, repeated infections, passing out, just feeling very, very ill.
I remember vividly even after all these years sitting opposite a GP in those early days who looked at me sternly over the rim of his glasses and said, “If you think you feel better then you will feel better,” and then he ushered me towards the door.
A few weeks later I went back and this time I was told that I needed to exercise more. “What you need,” he said, “is a job harvesting cabbages.” And he was serious!
It seems laughable now, but it was definitely the most damaging thing a healthcare professional has ever said to me and believe me there have been a few. For about the next year or so I thought I must just be imagining an illness, that it was my fault, it wasn’t real, and therefore I must hate myself for creating a set of self-destructive symptoms.
Then I saw a GP who having listened to my symptoms diagnosed M.E. But let’s not forget that this was the 1980s and M.E., I was informed, was a form of depression and so there was still very much a responsibility on me to snap out of it (not my words) and feel better.
I remember one-night laying on a makeshift bed on my parents’ bedroom floor, too ill to sleep alone in my room. Mum held my hand and told me she would look after me whatever it took.
The next day I remember laying on the sofa thinking to myself that there had to be some way out of feeling so terribly unwell, so almost completely drained of life and spirit… not even having the energy to move.
What I find so unbelievable is that there was no help whatsoever from any healthcare professional and instead I lay there feeling guilty for having an illness that most people dismissed as being all in my mind, or that did not really exist at all.
After a year or so my symptoms began to improve. I was able to go to work as long as I came home and went straight to bed. I had to make a decision – do I hold down a job or have some sort of life for myself?
Working in mental health
Financially it was more important to have a job… but it exhausted me at times, and I was in pain every day, and my stress tolerance levels were very low indeed.
Fortunately, my job was in mental health services, so at least my colleagues were understanding. I had long spells of time away from work when my symptoms got worse and I needed to rest all of the time.
For about ten years this illness went on and on. From the age of 18 to 28, these were the lost years indeed. They were the years when my friends went off to university, got jobs, got married, bought houses, had kids – in other words, all those around me were establishing their lives.
I spent a lot of those ten years lying in bed, feeling guilty, trying to cover up how I felt so as not to worry those who cared for me. I tried to do things, then I suffered extreme pain and exhaustion as a result.
I think the worst thing was the psychological damage that was done. I gave thanks every day that I did not have a progressive illness.
I still give thanks, but having an illness that had such an impact but that hardly anyone believed in just made me feel blame and guilt. Big powerful words aren’t they?
Oh, and then there was shame too, shame and embarrassment at saying “I have M.E.” and the insults that came back from people in return. So those ten years or so taught me that this illness was something I had to manage on my own, to cover up, to make excuses about, and to feel so useless and guilty about.
Learning to live with ME
Fast forward to 2018. I’d worked out how to live with ME… Rest, rest, and more rest. Listening to my body very closely, not pushing too hard, it certainly seemed to work. Outwardly life carried on, inwardly it was different.
Increasingly I felt weak, my walking changed, I felt my coordination deteriorating, and that worried me.
I also saw a significant change in my cognitive function, short-term memory, word recall, and sensory overload. I was also experiencing panic attacks.
I went to see a GP, I felt I needed to check that there was nothing else going on. Now don’t forget we’re in 2018 now.
The GP sat there in front of me and she said, “The best thing you can do is snap out of it and get on with life,” and do you know what I did? For the first time in my life, I sat in front of a healthcare professional and burst into tears.
A couple of weeks later I saw another GP, he said he’d refer me to a consultant, “You might have mitochondrial disease, Google it.” I got home, Googled it, it gave me the news that this could be fatal… I sat starring at the screen… I cried.
I waited 10 months to see the consultant, 10 months when Google and I became good friends.
Good old Google found me article after article about mitochondrial disease so that I could rule that out, and article after article about M.E. that made me determined to stop feeling so bad and guilty and useless and to blame.
When I saw the consultant and he actually said, “You have M.E.,” it was a moment that rather perversely made me smile.
I could have hugged him… Someone actually just took me seriously, someone understood… I had waited a long, long time to feel like everything was justified.
The next day one of my friends, who happens to be a senior healthcare professional, asked me how I got on at my hospital appointment. I told him, he laughed, “Ah, well, as we expected, it’s all in your head.”
One day, and I hope it will be in our lifetimes, people will look back with outrage at how those of us with M.E. have had to cope with our illness.
We have two battles to face, both our illness and others ignorance and perception of it…and sometimes I’m not sure which is the hardest to bear.
ME Awareness Month – May 2020
The Lost Years
The ME Association
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