Musings of the Chronically Ill – Some Thoughts I’ve Had While Writing These Posts

My life, for the past eleven years, has been entirely controlled by my illness. Since the beginning, I have had to plan my days around how I am feeling, and where I am going to, and how many toilets are close by. I am literally dictated by my broken body; I have gone to movies and missed chunks of scenes because I’ve had to clean myself up, I’ve sat in silence because laughing made my belly hurt, I have missed out on many a conversation because the options were to walk with my group and risk an accident or take some kind of transport in the hopes that I could hold it until I got home. I have lost so much over the years because I have been held back mentally and/or physically.

Having invisible illnesses makes life incredibly hard for he person suffering. Every single day, you wake up with pain, nausea, fatigue, just plain helplessness, or all the above. But you can’t just give up. You must go to work or school, put on a brave face, and pretend that everything is ok. I have always hated the idea of letting my illness control me, even though that is somewhat inevitable, I made the choice to not complain and to not let it rule me. So, I did just that! Most days I got out of bed, showered, tried to eat some breakfast and drink some tea, and then tried to make the most of my day. Of course, there were some days that were too hard, and that’s ok… but I just had to try and function for the majority of the days.

Through all the hard times, this has taught me many things; I know where almost all the public toilets are in town and at uni, I know the shortest route to get to those places, and I have learned how to put on a good face for the rest of the world. I have learned how to act strong when inside I feel like I’m falling apart. Not only has this been hard for me, but it has also been hard for those close to me. When talking about these memories with my mum, she told me that she cried many times because of how unhappy I was. She also felt helpless when looking at me because there was nothing that anyone could do to make it completely better. It’s also been hard on my partner. Thankfully, he is such a loving man who has accepted me through all my sickness and hard times and has helped me immensely, but it has taken an emotional toll on him too. Especially when I have been in such a dark headspace, it (unintentionally) affected him too. I brought him down with me and I hated myself for that in those times.

There is also the dreaded “But you don’t look sick” that you inevitably get when you have an invisible illness. When you become so good at ‘covering’ your illness and you can pretend like everything is ok on a day-to-day basis, you get some very funny looks when you try to describe how you’re feeling without sounding overly dramatic.