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 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 actually like. Since childhood, most of us plan out how many kids we want, a vague career plan, and maybe even the names of our future pets: but in reality things don’t usually pan out as expected.

Getting a diagnosis can be a big thing; in some respects it can be 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 spending two consecutive weeks off just curled up in bed, but 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 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 to 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 wining. This is emphasised by the fact that others might not understand your pain, or do not acknowledge the seriousness of it all, but it is in no way your fault for needing to vent how you feel: its just human nature. You’ll hear the patronising comments of “my uncle’s girlfriend's mum’s dog had that illness but was magically cured by [veganism or yoga],” and although this statement seems pretty ridiculous and exaggerated, its not too far from the truth. The main thing is not to get too hung up in the idea of having 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 progress. Even if this progression is not 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 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 and 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 feeling like a devastating endurance test at times, you will have good days. You’ll have days when your 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.

During an unfortunate hospital visit I had the pleasure of meeting a woman called Lynn. Stick thin, 50s or 60s, and had a handful of conditions. Through the night she bawled, it was truly heart-wrenching. When we woke we spoke about the night before and soon became fast friends; she was a fascinating and selfless woman, who despite the odds was the most passionate person about living life I’ve ever met. She said she was on hospital almost every month or so, but woke up excited for each day ahead, refusing to let her pain stop her from loving her life. Lynn was excited about the books she read and musicals she had seen, to see her visitors, or even to ask the staff about their families. “Living for the good days” was a phrase of hers which, as I read more and more about people with conditions similar to mine, the more I hear it. She 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 I should pass on: “health is far more important than grades, it more important than anything else”. It definitely can be hard at times to push forward when your body, and likely your mind too, is pushing back. But chronic illness is about balance.

It is very much about the unpredictable ups and downs, and this takes a long time to accept ( I’m still working on it). 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”.