Come with me on a trip to the ME/CFS specialist in the UK back in 2016.
I’m back in the UK for a doctor’s appointment. If I have access to two healthcare systems, I am sure as hell going to make the most of both of them. So far, about two years into experiencing full-time debilitating symptoms, it hasn’t got me too far. But I am finally here, sitting in front of the myalgic encephalomyelitis, ME/CFS specialist in Oxford. And for once, I am incredibly hopeful that things will finally change, and I can get back on track with living a normal life.
When I check the name of my ME/CFS specialist, I notice it’s quite strange that she is actually a specialist in infectious illnesses. ME is not an infectious illness. But I take it in good faith, and when a rather austere and stern-looking middle-aged doctor calls my name, my mum (who is with me for moral support) and I follow her into the room.
There are the usual endless questions:
“Do you drink alcohol?”
– “currently not at all”
“Do you smoke?”
– “Never”
“Do you do drugs?”
– “I live in Amsterdam, so very occasionally smoke weed. As in once every few months”
“What time do you go to sleep?”
– “around 11:00-12:00”
It carries on for a while. I describe my endless migraines, complete lack of energy to get moving, the constant pain and exhaustion. She then straps me to a heart rate machine, and we walk up and down the corridor for a couple of minutes. I am kicked out of the room so she can discuss my situation with the physio.
Eventually, we are called back into the room, and the verdict is given.
“We do think you probably qualify as having ME. But you are very unfit and need to stop going to bed so late. No wonder you are tired. You also need to stop taking weed,” she states.
I am stunned by her blunt comments and total lack of understanding of the tiredness I have just explained. The one thing she is correct about is that I am very unfit, and when I hear how high my heart rate was walking up and down the corridor, I am completely shocked. As an ex-athlete, it is almost unthinkable that only three years later, walking up and down a corridor gives me a similar heart rate to someone running.
“You just need to do some exercise. Have you heard of the Couch to 5k? You need to download the app and start doing it. Once you can run 5 kilometres, you will be feeling fit and healthy again. It can be hard to get motivated to exercise, but the app will help.”
I am in shock and don’t really know what to respond. But my mum, who is always polite and sees the good in everybody, replies in the iciest tone I’ve ever heard her use:
“Given that she is an ex-athlete, used to be a national champion, and has consistently been top of her classes in school, I don’t think she is averse to hard work and exercise”.
Very quickly after that, we are ushered out of the appointment, and that’s it. I know now the miracle cure for my illness.
Except I can feel my mum boiling with anger next to me. I just feel empty and need to cry. We’ve both heard the rumours in the ME community that graded exercise therapy doesn’t work as a cure. And I regularly see the impact of exercise on my body. So the miracle cure just doesn’t seem like such a miracle. It sounds nice, though. If I could run my way to full health, it would be a dream. I love running.
To have my debilitating symptoms reduced to an “aversion to exercise”, a bad sleep schedule and too much weed, was overwhelming to say the least. The same symptoms that had already caused me to spend so much time balled up in bed or on the floor, crying in pain and exhaustion for two years. Let alone to be told so in such an unfeeling, unsympathetic manner.
In the car ride home, it’s all turning over in my head. The strength with which the ME/CFS specialist insinuated that I was lazy makes me question everything that, as someone with an invisible illness, I already question constantly.
Am I making this up for attention? Am I just lazy? Do I just want to avoid becoming an adult? But then why would I make up such a badly believed illness? Why would I make myself suffer so much, miss out on so much and struggle to even do the basics of taking care of myself? Have I just convinced myself this is all real when it’s a lie? Do my parents feed into it?
As I spiral into doubt and confusion, I am painfully aware of the ME/CFS specialist’s false assumption about my lifestyle. But I am also painfully aware of how sick I have been, the fact that I can count the migraine-free days in the last 6 months on two hands, the fact that a once party girl can no longer touch alcohol without feeling awful, at the age of 21. It’s confusing because my experience and the doctor’s words and attitude just don’t add up together.
But a doctor is a doctor, and their word still holds weight. Especially when they are your ME/CFS specialist. So, despite the fact that the second we got home, my mum wrote a strongly worded complaint to the NHS about the doctor’s attitude, we decided that maybe I should try out the Couch to 5K. After all, what harm can it do trying?
I downloaded the app. That small action will have huge impacts on the next years of my life.
But that’s a story for the next blog post!
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