Living with JHS

There are many types of invisible illnesses, and we can all research the different variations, the definitions, the symptoms, the relief remedies (if any). But can we research what it’s like living with an invisible illness? Can we research what the future looks like for us as individuals? Can we research how our lives will change because of our invisible, and chronic, illnesses? The answer is no. No one can tell us how our lives might change and the daily struggles we might go through because, unless you suffer from these types of illnesses, you’ll never know. Here’s what I’ve learned living with a chronic, invisible illness.

If you know, or are friends with, someone who has a chronic illness then you may have an idea of how hard it can be. You’ve made plans with someone and they have to cancel at the last-minute. That was fine, and you understood, the first time but the third or fourth time? You’re thinking that they just don’t want to hang out with you. YOU’RE SO WRONG! In fact, we look forward to spending time with you and getting out the house for a change that, when we have to cancel, we feel annoyed and upset. I know we may do it a lot, but please don’t stop inviting us to places. When our spoons allow, we’ll be there!

Living with an invisible illness often means that people don’t understand what we’re going through on a daily basis, unless they also suffer with an illness or know someone who does. The problem with this? Those days when you really need to get out, perhaps you have a doctors appointment, but you’re really struggling and park in the disabled bay in a car park, or sit in the priority seats on the train/bus; the comments that you receive from people because “there’s nothing wrong with you”, “you’re faking it” and, even, “well you don’t even look sick”. THEY’RE HURTFUL. I didn’t choose to have this illness, I didn’t choose for it to have this effect on my life, and just because you’re incapable of seeing it and understanding that invisible illnesses DO exist, doesn’t give you the right to accuse me of “faking” my debilitating illness.

The amount of times I hear “you’re too young to have a chronic illness” astounds me. Something that comes with having an illness is spending a lot of time explaining to people what it is and what effect it has on you. Although it can get tiring at times, I don’t mind.. at least people are trying to understand. I don’t hear this phrase very often but, when I do, I feel like saying: if I had the choice, I would be out living my life like the rest of my friends.

If someone had told me, when I was first diagnosed, that I would be on the number and cocktail of pills I’m on now, I probably would have laughed. From painkillers, to vitamins, to anti-inflammatories, you name it, it’s in my pill box. So much so, I’ve just had to upgrade to a bigger one! Although it’s multi-coloured and I love it, so I’m not complaining… too much. Every now and again though, I have to take a break from my meds to give myself detox time. I know not everyone can do this and I count myself lucky that, from time-to-time, I find myself being able to take that break from them, just for a little while.

The hardest part of living with an invisible illness, for me, is having so many aspirations yet coming to the realisation that I may not get to fulfil them. I have always been a stubborn, determined perfectionist; Mam’s always telling me. However, career goals and travelling dreams, among many, are things that, at some point, I may have to accept might never happen.

So that’s just some of the things I’ve learned about living with a chronic illness. They’re hard to live with, mainly because of the huge stigma that surrounds them, but, if you ever find yourself needing to explain, remember there’s always other people who will understand! In my next post, I will be talking about ways in which you can overcome some of these struggles, so keep an eye out!

I wish you all a very happy and loving week ahead.