Day 4 IBD and anxiety
Day 5 – Part 1 IBD symptoms you might not know about
Day 5 – Part 2 Medication and side effects
One of our biggest hurdles with IBD is that it is an invisible illness, on the outside we may look fine but stick a camera in us (As the Dr’s so often do!) and you’ll realise how visible our diseases actually are. Just because you can’t see it, it doesn’t mean we’re not suffering. A big part for many with these diseases is putting on a brave face.
The day I took part in a 10km walk for Alzheimer’s is the day I began what would become the worst flare of my life. That morning, before we set off, I lost a lot of blood, signalling a flare I didn’t see coming. However, despite the stress and anxiety I immediately felt and the pain I was suddenly in, I carried on and did my best not to show it.
A month later, my flare had really taken hold and the pain and toilet trips were becoming close to unmanageable. But my graduation loomed and having looked forward to it for so long and having worked so hard to finally get there, I couldn’t face missing it. Yes it was hard, but I was determined to enjoy my day!
This flare eventually landed me in hospital four months later, which although helped, didn’t clear up the flare, this would still take another 3 months. During which time I tried to get things back to normal. My point isn’t that I’m brave or that I am better than anyone else because I could hide the difficulties I was having, it’s that just because I didn’t look ill, it doesn’t mean I wasn’t. IBD has become such a part of me, having been diagnosed 15 years ago and having had symptoms for far longer, that even I forgot I’m ill sometimes, it’s just the way I am. I remember explaining it to someone once and they were so sympathetic that it surprised me, I don’t think it always sinks in how serious this disease can be. On the flip side, there have been many people that I have had to convince that I’m ill, even within my own family, you can almost hear them thinking ‘well you don’t look ill’. Yes sometimes I look awful, drained and pale, however make up is a wonderful thing! I just wish there was more understanding, do I have to take someone to a colonoscopy with me so they can see what I see, so that they’ll believe me? And it’s not that I’m looking for sympathy because I’m not. Even at my worst if someone asks me how I am I reply ‘I’m fine’ because no one really wants to know that you’re not, which I don’t mind, they don’t need to know how many times I’ve been to the toilet that day. It’s a wider issue that I’m concerned with.
There has been a big campaign lately about incorporating invisible illnesses in disability toilet sign. I was given a radar key to use disabled toilets about 5 years ago and I carry it everywhere with me, however, to this day I think I’ve used it only once. The honest truth is that I’m embarrassed, because if you don’t look ill then people judge you. The key should have helped to relieve my anxiety but I refuse to use it, even if the queue for the bathroom is really long. However, if all disabled toilets held the new signs maybe I would feel more comfortable.
Sometimes, even the people around you can forget that you’re suffering sometimes. A couple of years ago I was a bridesmaid at someone’s wedding. We had to go round there, the morning of, for us all to get ready. When I woke up that morning I was very ill, partly anxiety but nevertheless, I had to wait for my stomach to settle, especially as I was going to a house that I didn’t feel completely comfortable using the toilet in. I was late getting there and was made to feel extremely bad about it. Now, it doesn’t sound as bad as you think. I was only late for the time I had been asked to be there which was quite early in the morning. It didn’t cause any problems, everyone was still ready with time to spare! If I had made her late to the church then of course that would have been understandable! However, we had plenty of time and still I was made to feel incredibly guilty over something I had no control over. Now this wasn’t a stranger, it wasn’t someone who didn’t know I was ill when she asked me to be a part of her day. It’s moments like these that I struggle the most with, because of course, when I turned up there that morning I looked absolutely fine!
If even the people around us, who know what’s wrong with us, don’t always believe us, how can we expect others to? If during this awareness week we can start to make IBD more visible then hopefully the understanding will follow. I’m not a brave person, I know that! I don’t stand up to IBD everyday like so many wonderful people do. The truth is I’m scared of it and what it does to me, but maybe with further understanding and visibility then all the newly diagnosed people will have an easier road ahead.