Hi everyone. I have been having a long hard think about what my next blog should be about and today I would like to share with you my views about Crohn’s disease being a hidden disability. I’d also like to mention how grateful I am for the great support on my last blog, the comments I received were really heart warming and made me feel like I had achieved something.
Growing up with Crohn’s disease I always get the same comments from people (if ever I chose to tell them about my condition). The point is for people to know that I have a disability I have to tell them. I don’t always tell people and am sure there are lots of people I meet that don’t know I have it. Sometimes I have to point it out for people to understand why I can’t physically do something or why I have to be careful, for example I have to watch what I eat. I can’t just have a McDonalds or a curry without thinking about the consequences to my health. When I do explain my condition I get comments which include,’ Nathan you look like a normal healthy child’ or ‘Nathan you seem so active and willing’ and my personal favourite ‘Nathan you look so well.’
Many of these comments are made because my ‘physical’ image doesn’t reflect what is actually happening inside me and the symptoms I have. Although well-meaning, at times these comments make me feel belittled. This is because they can come across as disbelieving which shows their lack of understanding. What should a person with Crohn’s disease actually look like?
During my school life I constantly have to remind my teachers about my condition; because even I can agree that it can be easy to forget things you don’t see. I hate bringing it up but need to at times. I need to be allowed to leave the class to go to the toilet and this wasn’t always happening leaving me in severe discomfort. A few a weeks ago I managed to get my hands on a toilet pass (just to point out that I am now in my 4th year at the school). The problem is I get to the toilet, need to go…. can’t go and end up spending a long time in there. When I return to the class at times I encounter a disapproving look from the teacher which leaves me nervous and embarrassed. There are loads of other times that I have issues with awareness at school but I will come back to that another time.
The point is that if I had a disability that people could see I wouldn’t have to keep reminding people. I should say that I don’t always tell people about Crohn’s disease. I only share it with people who I think are kind and considerate for obvious reasons – no one wants their condition used against them and obviously I only share personal information with people that I trust – well I guess I can trust you guys! I also don‘t want to be defined by my disability rather than who I am.
My advice to those people who have been told by someone they are talking to that they have Crohn’s disease from personal experience is to be empathetic and not sympathetic. Put yourself in that person’s shoes and respond how you would like to be treated.
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A really interesting blog Nathan, that will hopefully make people understand that living with a disability hidden or otherwise shouldn’t define who your are. I lived with a hidden disability for many years and totally understand the difference between sympathy and empathy.