Myalgic Encephalomyelitis: From Denial to Resilience

25th July 2024

Kerry Dick describes her journey from a childhood M.E. diagnosis.

It’s the nineties: the phone rang. My mum answered it, but then they needed to speak to me. Why? Apparently, the consultant doctor needed to tell me: the child, the person, the patient.

I remember the words vividly as I held the old-fashioned dial-up phone receiver – “It’s to let you know the diagnosis is something called ‘chronic fatigue, depression and exhaustion syndrome’, okay?”. That’s quite a mouthful straight-to-the-point synopsis without any further explanation, for a nearly 12-year-old to hear over the phone. So, I handed the phone receiver back to my mum. I can’t remember if anything else was said to Mum or me. But that was enough, and that phone call has forever stayed with me.

“Okay?!” “Nothing about this is remotely Okay!” I cried; I shouted, “Why me, I don’t want this.” And remember thinking, now what?! I can’t fully recall all that came next. Apart from the constant years of fatigue, another round of glandular fever (that’s what they thought I had first time around, which then led on to the M.E. diagnosis), and a super long and unknown ‘iffy’, drained unable-to-function feeling throughout my whole teenage years.

“She’s just a bit tired, she’ll be fine,” they said(‘they’ being the school team and some GPs). No, it was more than tired, and I wasn’t fine. I recognised that soon after, and didn’t feel able to cope with the push-back and lack of understanding. I’ll be honest, there’s a hazy phase but lots I do remember includes the overwhelming feeling of isolation, bed-bound days where if I managed to get to school it wouldn’t last long. I’d sit in the medical room in tears because I was tired and weak. No, not just tired, absolutely drained. Drained from cloudy thoughts of just needing to lie down to take away the pain. Desperate for the tiredness to stop, the suffering; drained physically and mentally burnt out.

Fatigue and failure most days. Failing to cope, failing to concentrate. The sore throats, the swollen glands continued, not forgetting the headaches. I wanted to sleep; needed to sleep. When school days got so bad, my attendance was rock bottom, but then so was I. Friends didn’t understand; hey, I didn’t even understand it! I tried to rebel and defy the tiredness, saying I’m not tired (I was). Relentless fatigue took over. I pushed myself to do things that resulted in far too much exhaustion. I remember I sat and watched TV at my grandparents’ house one day, and was shaking, legs trembling, as I just had no energy; falling asleep, my whole body weak, and that wasn’t even doing anything energetic – simply sitting on the sofa! That’s how bad it was in the beginning. I desperately wanted to go out with friends but with zero energy or strength, it was never going to happen. My teenage years were the absolute worst. It’s the hardest when you can’t understand it because even the professionals – GPs/doctors: the ones who should know how to help – at that time, couldn’t. Didn’t. Just no support. Left me almost in denial.

Remembering those early years after my diagnosis, as a child growing up into teenage years, navigating the usual changes alongside this deterioration in my health, I used to think if I slept then I’d feel better, but I was never refreshed even after a lengthy sleep. I still felt beyond tired, couldn’t always remember things when at my most drained. The headaches were intense, the tiredness didn’t feel like a ‘normal’ tiredness, otherwise I would feel better after a snooze or a good night’s sleep, right?! My mum used to have to help me walk to the bathroom on the bad days, and many times I collapsed along the way. Tears, loads of tears. Frustration and feeling nothing made me better, or physically stronger. When it got towards my GCSE years, there had to be some adjustments despite very mediocre support from school. Looking back now, I’m surprised I even managed to get through them at all. But I did – only just.

Moving on from compulsory education, I wanted a change. I got my place at college on a subject course I had so much passion for. This is it, I thought. Young adult now, surely I’m not going to be unwell all the time and suffer any more. I was wrong, but as a sufferer will know, this is the nature of M.E. So, I started college, but couldn’t complete my work to the standard I wanted, and my tutor recognised it more and more, with some attendance issues again. Struggling, unable to keep up and reach my potential. I was relapsing yet again! Six months into my college course and I was faced with another uncomfortable conversation. This quickly escalated to the suggestion not to finish the rest of the academic year! But instead, to take those extra months off ahead of the summer holidays, and restart from the beginning. M.E. was impacting my education, again. With a tearful agreement, I knew I had to surrender. No more denying it.

Fast forward to the next academic year: I returned to college a little more in the knowledge that I’d let my body rest and recuperate, to the level where it could just about cope and have less of an impactful relapse. I’d also read a bit more about CFS/M.E., determined not to let it get me down, not to let M.E. stop me. Through grit and determination I completed my course and gained enough points to get me onto my degree course. I did it, despite the wavering episodes always sneaking in a milder relapse or difficult day again. I got past this and the M.E. didn’t take over. Until it did. Again. More relapses during my degree studies.

In the years between graduation and further progression into adulthood I coped a bit more easily, knowing and accepting that this was a condition sometimes beyond my control, finding out my triggers and limitations. The world of work was, again, met with relapses and setbacks, and difficult conversations about my capabilities. Likewise, when planning a family, but at least by then there was more research – more learned understanding and recognition.

It still hasn’t left me. Older, perhaps a tad wiser, I began to understand my limits; I wouldn’t let it stop me, but began to know what my body needed to get by. Rest, meditation and more understanding. I’m now in my forties and still have relapses, difficult days and the odd awkward conversation. But nothing like my younger years.

One thing that stays with me is that the lack of understanding and professional support in the beginning didn’t stop me. I was hindered in many ways, yes, but I still got on with my life and M.E. has just become an element of me. I have a massive admiration and encouragement for anyone who strives to achieve how they want their life to progress, despite the varying impact this intense condition can have on the individual.

Does having M.E. make me resilient? Absolutely. The awful uneasy conversations and struggling so much in the beginning only leads me to be an advocate for discussion and open conversations, to increase awareness and acceptance.

M.E. is a part of me; it doesn’t define me.