Oftentimes, when people find out that I’m chronically ill I get asked the question “Would I rather have a visible or invisible iillness?” It’s such a hard question because there are “advantages” and “disadvantages” of each. Plus, I’ve never been on both sides of the coin before. How was I supposed to know if I would prefer having a visible illness if I didn’t know what it was like?
Well, now I kind of know. I have what I’m calling a visible invisible illness. How can I have a visible invisible illness you may ask? Easy. Sometimes my illness is visible and sometimes it’s not.
I have several different chronic illnesses and until about 3 weeks ago they were all invisible, until I was passed out on the floor (thanks Dysautonomia). It’s always been so frustrating to explain to people how I could look like a perfectly healthy 20 something female and yet be so sick at the same time. On the outside I’m the picture of health. On the inside my body is at war with itself 24/7 and no one can see that part or understand it but me.
But then, things started becoming more visible in my invisible illness world. I started using a wheelchair recently; especially when I’m at school to help with the extra weight of my book bag to prevent me from passing out as much. I don’t make it past 10 minutes standing any longer and that’s on a really good day. I also use it to counteract the pain from my Fibromyalgia and EDS. Let me tell ya what though, having a visible illness is very different than having an invisible illness. You are more noticeable. People start offering to do things for you that you can do yourself even in your wheelchair, but they feel sorry for you.
So now those visible invisible illnesses I was talking about. How does it feel to be someone with a visible invisible illness? Weird. That’s how. I use my wheelchair to get into school and class because I have my book bag. Then I walk to the bathroom. I see the same people both times and so I need to explain that I just need to use it for certain things because I have a condition that causes me to pass out sometimes. And they just stare. And it’s awkward. So I turn around and scurry back to class.
I also feel like I have to explain why some days I do not have to use a handicap parking space and some days I do. Some days my pain is less and some days it’s pretty high, but you can’t see it either way. Also lately my tiredness and fatigue is showing up on my face. I have had multiple people tell me the past two weeks that I look tired it is unreal. While part of me is excited that I’m finally starting to look as sick as I feel, I’m not excited that so many people are noticing the part that does not flatter me.
Anyway you cut it, having any type of illness visible or invisible is a journey every day. Either provides perspective for being grateful for the small things. But I think that being able to live in the realm of having a visible invisible illness gives you the best perspective. You know both sides of the story, how to accept anyone for themselves their uniqueness. Therefore, having a visible invisible illness seems like an amazing thing to me, so if that’s you, embrace yourself, because you are awesome!