I have thought a lot about writing an article about invisible illness… It is something that I have suffered with my whole life. I have Ehlers Danlos Syndrome, which is a connective tissue disorder, which causes joint dislocations and organ problems, but most of the time I look completely normal. When I am having a bad day I use a wheelchair or crutches and sometimes I have a feeding tube but day to day I look normal.
Both visible and invisible illnesses both are hard to live with, but today I am going to focus on invisible illnesses.
These are the 5 issues I want to highlight today:
1. Its hard when your sick, especially when you are undiagnosed, and you look completely normal because sometimes people don’t believe you are as sick as you actually are. You have to constantly explain your limitations to people over and over because you don’t look sick people think that you can do more than you can actually do.
2. Being doubted so often can actually make you doubt yourself because you feel like your going crazy when you feel so sick but no one can see that there is anything wrong- especially when diagnostic tests come back with nothing.
3. Another big problem is when you use disabled parking or bathrooms when you look fine. People don’t realize that I have an ileostomy so I need the extra room and I also go to the bathroom if I feel like I am going to pass out and don’t want to do that in public.
4. People don’t understand that your not going to “Get Well Soon” most chronic illnesses are for life and there isn’t an awful lot that can be done to help - you can only manage it you can't cure it.
5. Its also hard to have to cancel things - especially at late notice, because of symptoms that you can’t control. People think you are flaking when really you desperately wanted to go out but you can’t even get out of bed.
Thank you for reading and learning more about invisible illness.
Rachael Ralston - headspace Armadale YRG member