Living With An Invisible Illness – What’s It Like?
Updated: Jul 29, 2019
Living with an invisible illness is tough – living with multiple can be, at times, impossible. There are a lot of issues that come with having an invisible illness, so I thought I’d share mine. Did you know, I’m in pain every single day? Probably not.
One of the hardest aspects of it has to be the lack of understanding; how are people meant to actively understand something they’ve never experienced? Take inflammatory bowel disease, for example. People who suffer from IBD can find themselves planning out their days in terms of where the nearest toilet is; sometimes, they’ll need a quick escape, and so knowing where the WC is can remove a lot of panic from the situation. However, some people have no idea that these thoughts go through other people’s minds. Instead, it’s just like, ‘why are you obsessing over these tiny details? Can’t you just hold it in?’
Having vasculitis has meant that I’m constantly considering my environments, the situations I’m in and the people I’m in those situations with. I’m in my third year of university, and anytime I’m invited to a party, the following questions run through my head; can my boyfriend come? (He’ll know exactly what to do if I get ill quickly, can’t breathe, or need to leave). Will there be chairs? (Standing for any period of time is pretty tough). Will I be close to home? (I need to know that I can leave and get home in the event of an emergency). Will it be too warm/cold for me to cope? (The temperature REALLY affects my symptoms). What if I need to keep running to the toilet? (Yeah, bowel issues are involved). What if my aches and pains kick in? (Which they do, all the time, and very randomly). Will there be people there who understand what I’m going through? (Like, will they understand why I’m sat down all night and not drinking – at a party?) Will they think I’m a total dick if I can’t come? (This illness can knock you off your feet at the last minute, making you look flakier than a twirl stuffed filo pastry).
These questions (apart from the party specific one) can pretty much apply to any situation. I’ve had to essentially re-learn my whole body, understand its limits and reassess the situations I place myself in, which can be hard for other people to understand when they can wake up and go through their entire day without giving it a second thought. When I wake up, I’m thinking; am I going outside today? Do I have enough thermals? Have I taken on too much? Do I need to walk anywhere? Will I be able to walk that far? Have I got my tablets? Do I need a repeat prescription? Am I going to have someone with me if I do need to go out? When is my next hospital appointment? How do I deal with this new symptom I’m faced with? When am I going to be able to breathe properly? Am I ever going to be able to exercise again? Will I get to the point of being able to walk to uni again? Do I go on about this too much? When is my energy going to return? Am I going to be like this forever?
Another cause for concern is the case of part-time or full-time work, which can be insanely stressful when you’re living with something chronic and invisible. Luckily, the jobs I’m in right now are super accommodating; I can work from home and at my own pace, and my bosses are extremely kind. However, I know a lot of people who have and still do experience ignorant co-workers or bosses, because they just can’t see the issue. I’ve had a few people tell me to quit jobs/roles because ‘if you’re ill, you should quit.’ First of all, my bank account doesn’t run that way, and second of all, just because someone is ill/disabled, it doesn’t mean they’re not allowed nice things, like, the right to work. Cough.
Sadly, these people aren’t just in workplaces, but everywhere. When people can’t see your illness, they assume that sometimes you’re just making it up to suit the situation you’re in. I’ve had someone hurl some pretty hideous abuse at me for being able to make it to the theatre one day but not being able to make a meeting on another. Explaining that my condition has robbed a lot of opportunities from me escaped this person. Telling them that a) some days are better than others, b) my condition is temperamental, and c) that I have to put a ridiculous amount of measures in place to even enjoy things like the theatre, also escaped them. I was conning the system! When you already feel like you’re disappointing those around you for having to take time out to look after your health, this can make things feel a ton worse. My advice? Cut them out. After all, ‘Those Who Mind Don’t Matter, and Those Who Matter Don’t Mind’. Also, disclaimer: ill/disabled people are entitled to enjoy their life once in a while. It doesn’t mean they’re scamming everyone around them.
At the end of the day, your friends, family, colleagues, and everyone else in between should be encouraging you to take the time to get better and care for yourself when you need to most; forget anyone who thinks differently. You are a human being and you deserve to be supported in the roles you undertake.
Now, I hate to make this sound so doom-and-gloom, so I’m going to end this blog on a positive note. Whilst there are always going to people who don’t understand you or your condition, there are also going to be so many people who do understand. There are so many people out there who suffer with invisible illnesses! Since my diagnosis, I’ve been feeling so supported by those on the Vasculitis UK Facebook group, which has helped me in creating a much more positive mental attitude towards the huge life change I’ve undergone. Just this month on December 2nd there was a Vasculitis Fundraiser at the KGP Centre in Keyham, and it was a fantastic afternoon of meeting fellow vasculitis sufferers and raising money for charity. Thanks to the work of lovely Zoi and her many helpers, over £350 was raised for Vasculitis UK, which was a fantastic effort all around. Mary Clarke’s IBD Support Page on Facebook has also been endlessly supportive to those people who need it, myself included at times, and it’s been an incredible experience to be surrounded by hundreds of understanding people.
At the end of the day, I don’t think my illness will rule my life like this forever. I’m only at the very beginning stages of diagnosis – I have so many tests and examinations to undergo, which will all help in getting me to the base level of health I had before I went to Spain this summer. I believe that by the time I graduate, I’m going to be strong enough to get a ‘conventional’ job and be a ‘normal’ person. Throughout my life, I’m going to have relapses, and stages of remission. However, I do believe that I’ll be able to go to the gym again, and exercise, fly to Spain and stand in a queue. But right now, I’m not at that level – and that’s okay.