Welcome to The Invisible Vision Project’s Blog.
I’ve been putting off writing this blog for such a long time. The reason why I didn’t want to write it is because I didn’t want to come cross as complaining or ranting. But, I think I’ve been quiet for far too long, and now it’s the time to voice my opinion.
As a young person living with chronic illness and disability, I’ve heard these two comments countless times, “You are too young to be disabled/sick.” And, “You don’t look disabled/sick to me!” I’m now very tired of hearing comments like these, because it helps no one, and I know that I’m not alone in this situation. Many other young people living with chronic illness/disability have been told the same thing over and over again.
So, in today’s blog, I thought I should give my version of a much needed explanation as to why I’m young and have a disability & chronic illness. And, even though I’m disabled & chronically ill, but why I don’t look like it (I’ll focus more on this part).
To answer the first part, any body at any given age can have a disability and can develop a chronic health condition over one’s lifetime. Personally, I was born with an imperfect body to begin with. As a body that’s been sick since birth and as I grow and age (even though I’m not really THAT old just yet), I just happened to develop more complex issues over time with my physical health, as well as my mental health. So, that’s really all there is to that. Yes, I’m young and “supposedly” I should be healthy but, because I was born unwell in the first place, it’s not a surprise for me to become more sick as I grow. Now, this may not be the case for every one, hence I should emphasize: Every person and every physical body is different. Someone for instance, can be a sick baby at birth but could and did eventually grow out of their illness as they get into adulthood. But again, that’s not me, sadly.
To answer the second part, about “You don’t look sick to me!” Well, the easiest answer and response to that is: “Thank you.” (But, note that I’m not being sincerely and entirely thankful, not really). There are a few reasons why I don’t “look sick.” The first reason is: I don’t have to look sick to be sick. I don’t have to justify to anyone that I must look sick to be sick. Another reason, being that: I don’t really want to look sick, not with everyone I see. Imagine that you are walking down the street, you feel miserable, and you take your misery and put that on your face and bring it to everywhere you go. There’s probably no doubt that anywhere you go and anyone you see is going to ask, “Hey, what’s wrong?” Or, “Hey, are you OK?” And, imagine that you have to stop and answer these people’s question every 5 minutes. Wouldn’t THAT make you feel EVEN MORE MISERABLE? (I think it would!). So, for that reason, I don’t often carry my pain and misery around, it’s exhausting to feel miserable but, it’s even more exhausting to having to answer people’s questions every so often. In fact, I think it’s helpful that if I find a day I’ve been struggling a lot, but if I could manage to tidy myself up a bit, throw on an outfit and go out for a walk, to not having to stick with the pain and the misery I feel and fight inside me, at least for just a little bit, I can feel better and brighter. But of course, this doesn’t work every time. Someday, I just have to accept the reality that it’s going to be a day of practically doing nothing. And be OK with it.
In conclusion, when I’m struggling, a lot of time is in silence. When I’m hurting, sometimes it looks no different on the outside. The sadness I experience and the tears I shed from my disability & chronic illness may often be overlooked and remain invisible. I may even smile or laugh. That’s only because sometimes I needed to find an escape route, as I’m tired of having to be reminded of the difficult time 24/7. So, I’m what I call it: Looking Good but Feeling Awful.
This concludes today’s blog, thank you for reading to the end!
By: The Invisible Vision Project