I have been involved with the Invisible Disabilities Association for a few months and have found it to be very helpful in many ways. I’ve met several people who share some of the same struggles I do. I have also really enjoyed telling my story through the blog and hope it has inspired others.
A while back I was asked to consider telling my story on video. My first reaction was “Oh my gosh, I can’t do this.” The reason I struggled with doing a video was because I had been having a difficult few months physically to the point where I was not able to get my hair done for six months. What I realized is that my real struggle is that I don’t want anyone to see my real sickness. I thought that having my hair done would somehow cover up my invisible disabilities and would make me feel more secure.
I realized that it is very important for me to look as “normal” or “healthy” as I can before others see me (outside of my doctors, who see me at my worst – LOL!). I find myself fighting in many ways to look and feel healthy, but I know that I’m not. Therefore, anything I can do to change my outside appearance becomes more important. While this may sound vain, to people like me who can’t hide their disability when they are not feeling well, a good appearance has much more meaning than I’d like to admit. It is a form of security that helps me feel better about myself.
To conclude, what I’ve learned (the hard way) is that living with an invisible disability means that some days I’m going to look and feel like crap. Period. However, that is OK. Some days my struggle is going to be so hard that I could not hide it or make it look better no matter how hard I try. I found that I’m better off putting that energy into something that I can do to try and best manage the pain for that day and not worry about how I look because I know that it won’t make any difference.