I never will be. I need to remember that my voice will always be heard anywhere I want to shout about raising awareness. I am not, and never will be invisible!
I don’t quite know where I am going with this blog, or what it is I intend to do. All I do know is that even if I can raise awareness for a handful of people about what IBD is, I know I would have done some good.
The more people I speak to, the less IBD has ever been present in their lives. People associate IBD with just having stomach ache, but they don’t realise it is so much more than that. There is too much taboo when talking about bowel disease, people shy away talking about it. It’s not all about diarrhea!
Whenever I have had a flare up, or a period of not feeling very well, I can guarantee that I will always get the same one comment from one person, or several…
“But, you don’t look sick…?”
Congratulations, you are more of a moron than I originally thought!
No, you can’t see the illness I am suffering with, you can’t see the pain I am in, because for the last 11 years, I have learned to cope with it. The pain that may cause you to double over, is just daily life for me.
And so, I am treated with doubt, labelled an “attention-seeker” and made to feel as if my struggles are less important than someone else’s, simply because you cannot see my illness. I begin to slowly get left out of conversation and the invites to go out become less and less. My friendships drift apart and people begin to treat me differently, almost as if I am less than them.
But this isn’t the worst part. It appears that I become invisible to them.
Suddenly my needs as a chronically ill patient are forgotten. Somewhere along the way, it was overlooked that maybe I need a lot of support. Maybe I need people who will listen and be there with me through my ups and downs. Perhaps I even need people who will help me carry things when I am having a flare. Or maybe I simply need someone to ask me if I’m OK.
That person who broke their ankle doesn’t have to carry their things so they don’t have to weight bear more than they need to.
The person with a cold who has been off sick from work for the last 2 days gets asked how they are feeling now and if they feel well enough to be at work.
Then the person with the invisible illness, they gradually stop getting asked how they are feeling. They stop getting offered support if and when they need it. People tend to get bored with chronically ill patients, the news they have been in hospital again gets boring.
The longer someone is in pain, the better they become at hiding it. Just because I look ok and seem my normal self, doesn’t mean I feel that way.
So to anyone who doesn’t quite understand…
My illness is invisible, but it is real.
My illness is invisible, but I am not.
Words by Jack Sawyer