Ever wonder what it’s like to be so sick and disabled that you can’t live a normal life but you aren’t sick or disabled enough to actually be considered disabled?

That’s right, there’s a lot of us out there and it isn’t just me. We suffer from chronic illnesses, we can’t work full time, we’re always popping pills, spending most of our time at the doctor’s office. Half the time we wonder if we’re even a person at all. Yep, that’s us – the ¾ disabled population.

I’ve been diagnosed with POTS, EDS, Chiari, Trigeminal Neuralgia (and a few more “minor” chronic illnesses).

I finally have most of those somewhat under control now, three years later. But of course I’m not cured and there are still plenty of things I cannot do. Like standing for more than a half hour at a time. Most of the time I make it work but when applying for jobs, not so much.

You see, I am disabled but not enough for disability or social security or any of that. Why? Because I CAN work it’s just that I have some disabilities on the job. What a lot of businesses don’t understand is that though I have to sit, it doesn’t mean I can’t work while sitting – like I could be restocking shelves or ringing up customers or returning phone calls. But that usually doesn’t matter because it seems that a lot of businesses have policies about sitting to protect their “image”.

Here we go again with the whole INVISIBLE illness thing. Not only do I fight with the world on a daily basis about how I really am sick, but now I can’t even get a job because businesses don’t want it to look like they have a lazy employee sitting around. I assure you, I am just as competent and willing to work (if not more) as any other person working – I just have an extremely unfortunate and debilitating illness that doesn’t allow me to stand.

So what is a 25 ½ year old supposed to do?

I have about six months to find a job that can get me some sort of insurance coverage when I get kicked off my parents plan. Online part time jobs cannot provide me with insurance.  Full time hours are probably too much for my body to handle.

HOW ON EARTH DO I ADULT WITH THESE ILLNESSES?

Ok but really, is there nothing out there that we can do? Is no one willing to work with us? This cannot be. We have medicine to take, copays to pay, medical bills and what about food! I’m lucky I was able to move back in with my parents, how about others who aren’t able to do that? Something has to change!

Read more articles by Nisa here and here

Do you have a rare disease? Would you like to tell your story? Talk to us!