Rambling from someone

So I just found out about this today, and of course, well today hasn’t been the greatest of days for me to be writing something but if I don’t do it now I won’t and I think this is a great idea, so here I go.  It may be a bit long, not as coherent as I would like, and I’m likely going to miss things, but this has been on my mind lately. 

I have a variety of different disabilities, diagnosed and undiagnosed but they all have something in common, they are largely invisible.  Dealing with chronic health problems people seem to have the perception that if you can’t see them they must not exist.  People don’t seem to consider that when I’ve spent over 10 years (that’s more than half my life here) dealing with said health condition, I’ve learned to adapt my expectations to accommodate this.  I’m privileged in the sense that I’ve been able to attend school for most of my life, even participate in sports and many extra curricular activities.  I continue to work and volunteer, although I don’t have much of a social life because social activities drain too much energy and I have to make choices. 

For a chronic condition, I haven’t done too bad.  The problem however, is the people around me.  The commonality of headaches and migraines unfortunately has made many people dismiss them.  Or I get comments asking why I have headaches every day, as if it’s my fault, or as if I’m making it up.  I rarely feel well, but I rarely feel abnormally ill.  I usually know how to take care of myself, I’ve had to learn, but people don’t understand why. 

Why? Why do you need to lay down?  You look fine.  You must be lazy.  Why do you need to eat?  We just had lunch?  Why can’t you eat?  Are you on a diet, is that why you’re so thin.  That must be why you’re so sick all the time.  Why can’t I wear smelly things around you?  I like them.  Why? Why? Why?

Personally, I looked at where my life was going when I was 16 and I didn’t like it.  I didn’t feel well, my mental health wasn’t exactly at its peak and I’m still working on that, and I could barely interact with people, which was unfortunate because I actually wanted to for once.  I realized that I was internalizing what everyone else was telling me. 

I didn’t really know what to do it then but I slowly started to take care of my health again, I stopped caring that people made fun of me because I couldn’t do things that they did and stopped trying to push myself to be like them.  I accepted that my life was different, but it was my life I was going to live it.  I was going to work hard to stop complaining when I had so much to be happy about and try to make my life positive. 

Fast forward a bit over 4 years. 

What I’ve learned now is that society divides itself into 2 main categories: functioning and non functioning.  As people with disabilities we have 2 options, either be high functioning enough to struggle in the functioning society that we may or may not want to be apart of, or be second class non functioning citizens that aren’t really apart of “normal, functioning” society.  In my opinion you have to types of chronic illnesses, the ones that pretty much knock you down, or the ones that you’re supposed to just get used to and act like you don’t have. 

Well….here’s the thing, I HAVE IT.  The fact that you can’t see it doesn’t make it real.  And disabilities don’t just fit into neat little boxes.  That makes it easy to be ableist.  That makes it easy to write people off, as either disabled or able and lazy or whatever you want to call them.  But that’s not how this works. 

I’m a lot of things.  And for the record, headaches plus….let’s go with being non neuro typical isn’t the most productive mix.  At all.  If I have a bad headache everything I’ve learned over the years about how to function properly in society goes out the freaking window.  I shut down.  I also shut down on a lot of other occasions, but headaches are special.  Headaches are special because they create a combination, a combination that no one seems to understand.  Migraines especially are overwhelming that I just can’t do anything else, when I’m overwhelmed, with a few exceptions my mind just shuts down. 

But see, I’m usually a bright, smart, productive member of society, so the fact that I’m starring blank into space unable to comprehend whats going on, or walking with a blank look on my face to the nearest safe place to lay down is must mean that I’m being rude, or lazy.  I also have lots of friends so I couldn’t be autistic or anything, because my supportive parents would have clearly picked that up.  (I’m also not a big fan of the idea that every person comes from a nice supportive family.  Some do, some don’t.  Me, well, now, sort of.  A few years ago, hell no.) 

Because there’s that idea that you need to be functioning.  I once had a guidance counselor tell me that I needed help because I was nearly 18 and I couldn’t be an adult with this many issues.  She was of course the same woman who told me that I couldn’t have aspergers because I had too many friends.  (I guess she missed my first 3 years at that school, also, that’s a load of bull).  I didn’t appear autistic, therefore I couldn’t be.  Most days I appear healthy, therefore I must be.  Sometimes the only way you can tell I’m unwell is that I’m so exhausted I have to force expression into face, but of course most people assume I just don’t care. 

Partially, I don’t.  I’m going to be honest here.  I’m a very caring person who doesn’t care.  I don’t care about you if you’re not going to listen to me.  I’m tired of people looking on the outside and seeing that I’m “functioning” well and therefore have no disabilities.  It’s not a black and white scale.  I don’t judge myself by the same standards most able bodied/healthy people do because there’s not point.  I have my own standards and I’m learning that it’s okay to stay home and watch TV all day when I’m too tired or dizzy to get out of bed.  I’m learning to not buy into the idea that I have to act like everyone else all the time in order to be a productive member of society, if only a few people can accept me for me, well, then those are the few that count. 

Because this whole thing about the importance about functioning, well, I’m convinced it’s bull shit.  I have a lot to write about personal experience because I’m learning more and more how much I’ve been scared that I’m not…..I don’t know that some how I’m not valid.  It goes a lot into people always telling me that.  My whole life I’ve always heard

“It’s just a headache”

“How hard is it to walk in a straight line?”

“stop over reacting”

“Stop being lazy”

“You’re only doing that so people will think you have aspergers”

“Learn to be more normal”

“Learn social cues”

“What’s wrong with you”

Because no one ever accepted me as valid.  And that is a huge problem.  People are individuals, and need to be treated as such.  And people with disabilities are just that, people with disabilities. 

And a quick side note, along with all this is the fact that many people face difficulties in getting official diagnosis, and that also plays a role in this.  I feel that people rely too often on things that are diagnosed, and don’t understand how hard it can be to obtain that.