As a child, I was taught about chronic illnesses—illnesses that, while they can’t kill you, don’t just go away like a common cold. I was taught that these illnesses were incurable and extremely awful to deal with. As a child, I showed respect to those with chronic illnesses and secretly hoped I would never get one myself. Then, of course, I did.
At first, it was just migraines, which were manageable, then fibromyalgia and mental health issues joined the party. I realised more and more that what I was taught as a kid was pointless because no amount of learning can prepare you for living it.
However, what I noticed most was how people reacted to me as my illnesses became more obvious. Pity, confusion, and sometimes outright disgust at the fact I couldn’t act normal.
I’ve always tried my best to blend in, but illness has robbed me of the ability to do this. Now, when strangers look at me, I wonder what they see. Do they see a young person, going about their day? Or, perhaps, do they see the mobility aid first? Thankfully, I'm blessed with a partner who is extremely understanding of the ups and downs of fibromyalgia. It was in his family already, so he is sort of used to it.
However, my friends and relatives are less understanding. Some of them are baffled by the fact that some days I can walk fine, without the need for my mobility devices but then, maybe, the next day, I may not be able to get out of bed.
I always seem to have a speech ready when someone asks what fibromyalgia is.
I feel there needs to be greater awareness of what a chronic illness entails so I can stop answering why, suddenly, I’m so much worse than I was yesterday.
I believe it would also help people dealing with a diagnosis if there was more awareness around their condition. Someone I know has Fibromyalgia, too, but carries around a print out of what it is, its symptoms and such because they got so sick of explaining it to people.
If a chronic illness is mentioned in the mainstream media, it is often in a saddening way. Have you ever seen a plotline where a chronically ill character doesn’t live a miserable life used as a tear jerker in stories?
If a 19-year-old, like me, in your average soap opera, had fibromyalgia, what do you think their plotline would be? Would it be anything but a tragedy?
The only awareness that chronic illness seems to get is pity or inspiration porn. In my opinion, I find inspiration porn infuriating as it invalidates the struggles that disabled people face in life to get to the achievement that they have and often brings people who know nothing about disability out of the woodworks screeching “the only disability is a bad attitude.”
Thankfully, this is slowly changing. Whether this is due to celebrities being more open about their illnesses than ever before or because the internet is just the internet. I would, however, like it to be faster.
Of course, there are a billion chronic illnesses, so expecting everyone to be aware of all of them would be a little unrealistic. But, perhaps, if people were more aware of what a general chronic illness can cause, and how to be more understanding, the world would be a better place.