I think that it's about time we cleared something up in the chronic illness community. I am sixteen years old, and have now been battling chronic illness for roughly a third of my life. Quite hefty when you put it like that, which is why I usually don't. None of my problems have gotten any easier over the years – if anything, the amount of struggles I started with has multiplied with time. I grew into a disabled body, soul-crushingly shattered to see my peers flourish and achieve while I struggled to complete basic tasks like getting through a school day, get out of bed in the morning, or shower.
In the age of social media, we have access to a community of people experiencing similar things to oneself just a few clicks away. This, for teenage, disabled, me was both a blessing and a curse. On the one hand, a handful of the people I've met online are incredibly supportive and know exactly how to relate to my personal issues. They let me rant, and help me out of my darkest holes when I fall into them. Some things, however, that I've stumbled upon thousands of times while connecting with other chronically ill people online are harmful rhetorics pushed upon us by non-disabled people, disguised as positivity.
I remember how useless I felt when scrolling through the #chronicillness hashtag online and seeing a post that read: 'You can do anything you put your mind to'. Bullshit. I knew that there were (and still are) a great deal of things that I cannot do because my health prevents it. Continuing to scroll, and seeing hundreds of variations on the same idea – ‘Every mountain is climbable!' or ‘Mind over matter!' all the way to ‘Recovery is all about your attitude!' – I felt my self-esteem plummet. Was I weak because I couldn't run? Or even finish my homework without fatigue pulling at every bone in my body? Even worse, was I, unable to be incredibly positive about my life, somehow at fault for my lack of progress? The guilt imposed by this faux-activism was upsetting, and in hindsight, just wrong.
Of course, with chronic illnesses, we need a great amount of mental strength. I myself struggle with clinical depression and a severe anxiety disorder. It is definitely important to try and be positive, and not allow ourselves to spiral into an inescapable black hole. I am by no means an advocate for being overly pessimistic. This does not, however, mean we can plaster over our pain with pretty little ideas that inevitably aren't true and undermine our struggles.
For the past two years, I have been an incredibly high-achieving student at the top of my class. I prided myself on my work, and threw every waking minute into revision and extra research, without a doubt going way over the top in my attempt to make up for my limitations by excelling academically. This, though I refused to believe it, damaged my mental health significantly, and over time, became less and less sustainable. Now I'm at a point where I barely manage to make it to school in the first place, much less continue to do well in my studies. I have begun to realise that as much as I want to do some things, my body has a limit. A limit I cannot cross. And I can't do everything that I put my mind to.
Another phrase I must have had said to me thousands of times (and by far the one that infuriates me the most) is that my illnesses do not define me. We utter this phrase to all of our peers going through a tough patch; parents say it well-meaningly; social media shouts it from whichever rooftop it can.
Something I feel just isn't acknowledged enough, or perhaps it's a truth we all avoid, is that if you're chronically ill, it's okay if your illness defines you. I know that mine certainly do. They say that your experiences and your choices are what make you who you are - I can barely remember a time when I wasn't ill – my prepubescent years through to now have been riddled with hospital stays, medication, and diagnosises. I've been isolated from my peers through illness, and everything I've done in the past five and a half years has been in some way affected by my health.
The choices I make every day are a series of weighing up priorities: what can my body manage today? How long will my energy last to get this task done? Everything I do is measured up against my internal compass of ‘how I'm doing'. If I want to meet up with friends on Saturday, I know I won't be able to do anything except get up and eat food on Sunday. Going to school full-time every day in a week means I won't be able to do my homework once I get home.
Even my future hangs from the thread of my wellbeing. I'm an aspiring medicine student, but who knows whether I'll even get as far as moving out of home. The large future I imagined for myself when I was little has shrunk over time – a bitter reality that has had me cursing my luck more than once and leaves a sour taste in my mouth.
I don't consider myself to be a negative person. I'm by no means an optimist either – I just think I'm realistic. I'm disadvantaged, and anything I want to achieve will have to be worked harder for. Acknowledging this, and coming to terms with it (a process I am only just beginning, and God knows will take me an incredibly long time), is something that will, in the long run, allow me to lead a healthier, and probably even happier life.
There's a difference between being positive and sugar-coating our issues. The notion that chronic illness is something one can overcome with enough willpower is false and harmful. It's something that non-disabled people push upon us because they are made uncomfortable by the fact that we have different limitations to them.We do not fit completely into their abled-world, and it's easier for us to downplay our symptoms, pretend we're 'not that disabled' to fit into their worldview, than it is for them to adjust to us. Coming at us from every angle with unsolicited advice and sweet little concepts simultaneously makes them feel like they have done something wonderful in 'supporting' us, and puts pressure on us to just suck it up and be better.
We need to allow defining things to define us. Each person is a million things, and every piece of us makes us who we are – we shouldn't deny any part of ourselves to fit in with a world that wasn't designed for us.