Accepting Chronic Illness

I had to resist the temptation to call this “Have you tried yoga?”

Chronic illness is something that many people have to deal with, but for the majority it is something they’ll never even consider happening to them. I like the phrase “you don’t ‘get it’ until you get it” as it is the most accurate depiction of what chronic illness is really like. Since childhood, most of us plan out how many we kids we want, have a vague idea of ideal jobs, and maybe the name of our future pets, but in reality things don’t usually pan out exactly as planned.

Getting a diagnosis can be a big thing; in some respects it’s life changing. It can be hard to come to terms with the fact that some days not as much can be achieved, and on some days all you’ll do is sleep. I know my past self would have loved the idea of taking two consecutive weeks off just to lay curled up in bed, but the present me is far from that. It sounds like the easy life, but trust me, it really isn’t. Many times I’ve heard able-bodied people tell me, “you’re more than your illness” or something along similar lines, and we’ve all been taught to “take ‘I can’t’ out of the dictionary!”

For some that’s easier said than done.

“I can, I can,” I tell myself, yet on some days I physically cannot, and that’s okay. I’d love to be superhuman and do everything everyone else does and more, but for the most part it is better to acknowledge what is wrong and work on it, rather than fixate on the idea of being someone else.

Especially for invisible illnesses, there is a certain stress on how much you tell people, as you tread the borderline between needing a little compassion and making yourself feel like you’re just whining. This is emphasised by the fact that others might not understand your pain, or don’t acknowledge the seriousness of it all, but it is in no way your fault for needing to vent about how you feel: it’s just human nature. You’ll hear things like “My uncle’s girlfriend’s mum’s dog had this illness but was magically cured by [probably becoming a vegan or yoga],” and although this statement seems pretty ridiculous and exaggerated, it’s not too far from the truth. The main thing is to not get too hung up on the idea of an immediate cure, just set out small goals to improve your health as well as you can (e.g. eating more healthily and trying to schedule your day out more), and over time you may see some progression. Even if this progression isn’t physical, you will realise that over time you become more capable of dealing with the unpredictability, and you will learn how to deal with certain situations.

Accepting the fact that things aren’t exactly as you want them to be can be just as frustrating as the illness itself; speaking from personal experience, it can be a total pain when your body does the opposite of what it should, making your goals seem like distant dreams. There will be days when you have plans with family or friends but your health will prevent you from fulfilling them, and honestly, it can suck sometimes. The thing to remember in times like these is that you’re not alone, and despite it seeming like a devastating endurance test at times, you will have good days. You’ll have days when the pain meds work fantastically, days when you can do all you set out to do, and days when you’re amazingly happy regardless of your body’s state.

Roughly this time last year I met a woman called Lynn. She was stick thin, in her 50s or 60s, and had a handful of illnesses (all of which sounded pretty painful). For the first two nights she cried a lot, bawled even, and honestly it was one of the most heart wrenching moments of my entire life. When we woke in the morning she asked me if she disturbed my sleep and if I was feeling better. We became fast friends; talking about family, friends, musicals, books, everything really. Lynn was a fascinating and selfless woman, who in my eyes was a hero. She had told me about how she ends up back in the hospital once every month or so, but whatever came her way she’d still be excited when she woke up because she refused to let her pain stop her from loving her life. She was excited about going home, or because of her visitors, and even happy to chat with staff about their own kids. “Living for the good days” was a phrase of hers which, as I read more and more about people with conditions similar to my own, I hear more and more often. Lynn was the best example of the power of hope, and has been my inspiration through all of this to carry on. When chatting about starting my A Levels she told me something that I should pass on: “health is far more important than grades”. It definitely can be hard at times to keep pushing forward when your body, and likely your mind too, is pushing back. But having a chronic illness is about balance.

It is very much about the unpredictable ups and downs, and this takes a long time to accept (which is something I’m still in the process of doing). But no matter how much it sucks, we’re all still living for the good days.

As Churchill once famously said, “if you’re going through hell, keep going”.