I have the greatest pleasure on Earth of having not one but two chronic and incurable illnesses despite looking like I am in perfect health. Until a couple years ago, I was very active; I went to the gym, played tennis, and walked everywhere I went. Then, I got smacked down with the iron hammer of disability and have been just having a whale of a time…

Unexpectedly, my health started to decline. I started having a lot of medical issues arise concurrently and pain whenever I walked around for more than five minutes. Since childhood, I complained about joint pain, but never to the point of being bed bound for days. It is an uphill battle getting a diagnosis; in fact, it was harder than getting my bachelor’s degree. Eventually, after making myself the biggest pain in the arse for every single doctor at my GP surgery, I got sent to specialist after specialist. I had the joy of discovering that I not only have ulcerative colitis, but I also have fibromyalgia.

You, like most people, probably don’t know what either of those mean. In a nutshell, my body hates my intestines, and my brain hates my joints. Living with two separate chronic and invisible illnesses poses some issues, socially and practically. It’s awkward explaining to a stranger why your joints hurt or the fact your brain fog is making everyone sound like their speaking in tongues or any number of other issues.

Getting used to being chronically ill takes adjusting, and many people, including myself, go through periods of grieving because it’s hard to accept how your body has changed. Remembering to laugh helps; I often consider myself to be a 23-year-old stuck with the innards of an 83-year-old. Being immobile and horizontal is my best friend, lying down—even for fifteen minutes—can help temporarily during a flare up. Patience for yourself is key, I often struggle with giving myself grace and acknowledging that I have more limitations than others. Saying no to things when you don’t feel well will save you many hours of pain or discomfort, pushing through helps no one.

“I do have a few tricks of the trade, some sage advice if you will, of how to get through to doctors.”

Whenever I visit a doctor, I come in with a list of symptoms and questions I want to ask. If it’s a continuous issue, try to record your day to day, so you have tangible information. Be prepared to defend yourself, as intimidating as it is you know your body, a doctor you’ve just met for the first time and have ten minutes with is not going to know what you’re feeling better than you. If you don’t think the doctor you spoke with really listened, go back to see another one… and another… and another. For me it took five doctors to find one that didn’t say “you’re too young to have joint problems” or “you’re probably just tired” or the classic “have you considered going on the pill”. It takes just one to listen to you, to really hear you to get help.

Genuinely, it’s tough sometimes to remember that I am not as physically able as I once was and to really know my limits. But I will leave you with this: you don’t realise what a blessing free healthcare is. Advocate for yourself—if you think something is wrong, then something is probably wrong—and take the help you are given. Even if we are working with a broken healthcare system, it is better then continuing to suffer; your pain is worthy of care, and so are you. This is just a slice of what it’s like when your body decides it’s time to unionise against its host.