Another Layer of Invisibility for Chronic Illness

Posted: June 14, 2015 in Disability
Tags: , , , , ,

I was working on a post to a facebook group for people with disabilities I’m in, and as I was writing it, I started to think I should just change it a bit for a blog post.

If you aren’t familiar with spoon theory already, it might be useful to read up on what it means before reading this blog post.

I started out writing just about how frustrated I feel about the fact that as much as I need and want to find a job, in many ways being unemployed allows me to feel like a “normal” person. I feel like a normal person when I have the spoons to do simple things like keep up with my dishes, and laundry. I’ve even been able to paint a room in my house, and furniture for that room, and get close to getting that room set up (hopefully once I do, I can move on to another room, since that is one room out of 6 (2 bedroom house, with living room, dining room, kitchen, and bathroom).

I have the spoons to exercise and even have been able to spend some time on other hobbies like knitting, crochet, and drawing.

But as I think about this and ways it frustrates me, I realize that part of it is that my chronic illnesses are even more invisible because of the fact that managing spoons can’t always be seen. Saying invisible disability mainly means that if you look at me, there are no obvious physical indicators of disability/chronic illness. But it can also be invisible in terms of behavior as well as just physical appearance. Because when I do something that is just typical for healthy able-bodied folks, but it takes all my spoons to do it, they don’t see that. They just see me doing the same things as them, without seeing the consequences after of having no more spoons left. For example, with work, coworkers could see me at work all day, able to do that. They don’t see when I get home all out of spoons and just crash, where even basic things like cooking dinner are off the table let alone anything that would require far more effort (spoons). Or even like having a fun outing day now and then with friends, I can looks “normal” (healthy, able bodied) in my ability to do that, but they don’t see the next day when I’m too sick to get out of bed all day because of it where they day after is just another day for them. Of course there is also the part that if you see me, it’s probably a good day. Or at least average day. Maybe just a not terrible day. But on bad days, you won’t see me. I’ll be too ill to leave home or I’ll be in the hospital. But it’s normal that people only see the good days, and then extrapolate from what they consider normal and assume the rest of your time looks like that.

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