I was walking into Starbucks this morning when it happened. See, I had  kind of expected it to happen sooner or later, but I at least thought it would happen on a day that I had brushed my hair. I parked in the handicap spot—it was maybe the second time I’d used my parking pass since I obtained it a week and a half earlier. As I was getting out of the car, some guy sitting at a table outside looked at me with the nastiest look you could imagine and said, “Well, you don’t look handicapped.”

Now let me break this down for you: as someone who has had, in one sense or another, a chronic “invisible” illness called Postural orthostatic tachycardia syndrome (P.O.T.S)  throughout her entire life, you best believe I’ve dealt with my fair share of ignorant comments.

However, usually it’s from people I know in one respect or another that have the courage to ask and accuse. But now that I am taking my chronic illness out into the real world, I guess it’s open season on me.

I looked back at this guy sitting there drinking his coffee—completely calm, having no idea who I was, what I’d been through and how much the humiliation of utilizing the accessibility assets of my chronic  illness weighed on me.

And I froze.

I was all at once: humiliated, embarrassed, ashamed, indignant, furious, bewildered and shocked. I looked at him, shrugged, and then stopped at the door as I was walking in. I looked back and said, “You never know when people are disabled. I have a heart condition,” and shaking, I went inside.

And I didn’t feel good about it. Because it was not a good enough response to someone who had just made such a powerful accusation at me. My response had done nothing to release my anger or educate him. In fact, he was probably still outside, mumbling about what a ridiculous artist I was and how someone with a real, visible disability would probably need the space I was so inconsiderately occupying.

I felt like crying, my heart was racing, and I stumbled over my drink order and waited at the counter, staring out the window at the back of his head. It occurred to me that the more I try to live my life, go out, be normal—the more discrimination I was going to end up fighting. This was such a sick, horrible feeling—and even if I had gone out there and yelled at him about what an incredibly, misinformed individual he was, that he knew nothing, that he had no idea what my situation was, it would have only made me feel worse.

I realized that I don’t have the energy to waste on people like this.

And as I got back in my car, intently avoiding eye contact, I started to think about how I wanted to handle this from now on.

And that’s when I came up with this idea …… and this idea.

6 thoughts on ““Well, you don’t look Handicapped!” – Living with a Chronic Invisible Heart Condition Called P.O.T.S”

  1. Alex says:

    You rock! I can’t stand judgmental people. You don’t know what burdens people bear on their shoulders. Instead of taking something from the person they are judging people take away an opportunity for them to learn something. I love your two ideas those are great!

  2. F says:

    I know exactly how this feel. I too have Postural Tachycardia Syndrome. Having an Invisible illness can be embarrassing, especially at work. Constantly feeling like burden, people judging you because you “don’t look sick” and also I’m ” too young”
    But I just have to get on with it, ignore judgemental people.
    If a person had commented I would just ” that’s a perfect example why you shouldn’t judge a book by its cover… I have a heart condition, have you got anything to say now? “

  3. Kelsey says:

    I was just diagnosed with POTS, I already have invisible chronic illnesses. I am tired of hearing “you’re too young to be sick” “Just get up and move like the rest of us” I am scared. Honestly I am TERRIFIED.

  4. jenna says:

    I haven’t had this happen yet but at work I’m known as the fainting girl. The only comment I hear is we just want you to get better. You think I don’t want I’d love to stop fainting all the time is not as simple as that though.

  5. Elizabeth says:

    I had a friend ask if I ever feel guilty for using my handicap parking tag. As someone who works with the disabled, (now only part-time due to my condition) I would never miss use this. Yes, people with POTS look abled, but that is not reality. It took awhile for me to accept comments like this without becoming too upset, but I realize the burden of proof is on me to raise awareness of this hidden disorder.

  6. FloatingOnSmiles (FOS) says:

    “My disability isn’t visible, but my parking pass is” , my response.

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