I grew up in a highly academic family. Both of my parents and one of my siblings are doctors: it was MS and Parkinson’s, diabetes and cancer that were discussed around the dinner table. It’s therefore not much of a surprise that I internalised a lot of the medical community’s attitudes toward misunderstood illnesses like CFS/FM.
One clear memory is from when I had a particularly terrible bout of the ‘flu. I was perhaps fourteen or sixteen years old at the time, and for weeks after the initial virus, my body felt heavy: no matter how much I rested, the fatigue weighed me down. My mother called this postviral fatigue. I remember asking her if that was the same thing as chronic fatigue, and she simply scoffed. ‘Chronic fatigue isn’t real,’ she said. According to her, if it was so-called ‘chronic fatigue’, the patient just needed to get over it. It was a condition that just didn’t exist. After that, I considered complaints of chronic fatigue warily.
It’s not real, after all.
Before I was diagnosed with CFS/FM, the hardest part of everything (aside from, you know, these utterly bewildering symptoms that seemed to have no cause) was getting people to believe that something was wrong with my body. This was complicated by the fact that I was simultaneously recovering from a near-fatal eating disorder – fatigue, bloating, pain, headache, oedema, stomach cramps, nausea, et cetera go hand-in-hand with the refeeding process. Having had treatment for my eating disorder before, I knew something different was wrong, but convincing anyone of that seemed about as realistic as walking to the moon.
During this period, it was pretty hard to find a doctor who wouldn’t put my complaints down to my other conditions. I had a GP who, less than two months into my refeeding program, told me to ‘go for a run,’ never mind the complaint that brought me into the clinic: the pain that was preventing me from leaving the house on most days. My mother looked at me in disbelief when I struggled to open doors that I had had no issue with for the previous eighteen years. It seemed an absolute impossibility that I could be telling the truth about the pain, given the absence of lab results to back it up.
Eventually, it was my mother who recommended I ask for a referral to a certain pain/fatigue specialist. My appointment rolled around, and after a 2- or 3-hour consultation I walked out with a diagnosis. It was the first time someone had actually listened, unbiased by my history, and it was heartbreaking.
Fast forward two years, and I was naïve enough to believe I could undertake a full-time study load at university. My best friend at the time berated me when I subsequently had to drop most of my units, unable to comprehend that I literally could not take on a higher study load and still function. It was all turned into a vicious personal attack: I was lazy, I was letting down my family, I was falling short of expectations, I was a failure, and so on. Unsurprisingly, the friendship didn’t last too long after that.
A little more recently, I mentioned being tired to my sister (who had had a late shift the night before at work). ‘Don’t talk to me about being tired,’ she said, somewhat forcefully. After a stare of utter disbelief from me, she sheepishly added, ‘I’m joking, I know you have a medical condition.’ Yes, hilarious.
But enough of all that.
What I’ve learnt from interactions like these is that the world does not like things that it doesn’t understand, CFS/FM included. When I tell people about my illness, to me, it is a process of ‘coming out’ – and I make this analogy as a woman who doesn’t identify as straight. I am not ashamed of my illness, but I’m wary of other people’s reactions to it: you can try to gauge the situation until the cows come home but you never quite know what you’re going to get.
Will they believe me, or ridicule me, or make my life unbearable?
It seems extreme, but I’ve had all of those reactions and more. I’ve learnt to deal with the negative reactions by working on my own attitudes, coming to terms with the reality of my illness, and choosing to spend my time with people who respect me for who I am. I don’t think acceptance of my ‘new normal’ is a task that will ever be complete, and it’s hardest when a flare gets in the way of me trying to live my life. But I keep trying. I’m lucky enough to have a number of friends who respect my limitations and try to understand my experiences as best they can. I guess, in the end, that’s all I can ask for.