why I prefer having an invisible illness

Prior to having to quit my job due to POTS I wore dress clothes each workday. When I’d run to the store after work, sometimes people would say, “Do you go to school?” (There are 4 colleges in the town I worked), or “Say, where do you work?” When I take Emma out and about with me, people tell me how adorable she is and ask how old she is. When I was standing in line to return something at a store last month, someone commented on how beautiful my engagement ring is. All of these comments and questions are made because of the appearance I put out.

When I am in Walmart using a motor cart, people ask me, “How long will you be sick?” “Will you ever get better?” “Do you need help to your car?” “Do you need coupons?” “You’re so young **shakes head sadly” .. and so on. These questions are also all made because of the appearance I put out. I was surprised people are so forward in asking me this stuff. One theory I have is that I look otherwise healthy, so perhaps they figure what ever is wrong with me can’t be that bad so it isn’t rude to ask. I don’t mind, I just briefly answer the questions. I enjoy raising awareness about POTS. If I’m in a bad mood, I’m not going to lie to my dear readers… I tell them I’ll never get better and smile at them. Nothing makes someone leave you alone faster than that response.

When I am in a wheelchair, even if I am in dress clothes, even if I just shined my engagement ring, even if Emma is on my lap, people tend to acknowledge visual signs of a disability (wheelchair) before the actual person. This, my friends, is why POTS is what is called an invisible illness. Just looking at me, you’d never guess I have a disability that has me virtually bedridden. However, if we throw in a wheelchair, or if I have to lye flat in a strange place, it signals to people that I have a disability. It makes POTS not quite so invisible.

A lot of people with an invisible illness hate the fact their illness is invisible. They feel like it makes people minimize their complaints. I used to feel this way most of the time. I hated that when I went into a new doctor, they would look and see a healthy 20 year old girl. They’d do test after test trying to find something wrong, and would find nothing. I looked healthy, I tested out healthy, so… I must be healthy (despite the severe anxiety disorder and depression they were all so sure must be the culprit — bad doctors will say this even after you present them with a psychiatric evaluation stating the contrary). I would have given anything to look sick and be taken more seriously by these doctors!

However, I now feel completely differently.

If I am working with a good doctor, it doesn’t matter how I look. People walk into their office looking healthy all of the time and end up having terrible illnesses such as cancer. It was just the fact I had been through so many bad doctors who didn’t listen, that I was sure the reason they didn’t take me seriously was because of how I looked. In reality, they were the doctors who saw the patient as nothing more than their lab tests. If a lab doesn’t say something is wrong, these doctors conclude the patient must be suffering from a psychological illness. I prefer doctors in the school of thought that they are treating and diagnosing a patient based on their symptoms, not a patient based on their blood work. Blood work can be very helpful, but it isn’t everything. These doctors don’t care if I walk into their office in a ballgown and a full up-do. While they may be a bit confused, they’ll still treat me based on my symptoms, not just treat me based on labs.

As for the people around me, the fact my illness is invisible hasn’t made a big difference in how they empathize with me and understand my illness. They knew me as a person first. They got to know me for my strengths, skills, likes and dislikes. Then, they found out about the disability. Based on what they knew about me already, they recognized my illness wasn’t “all in my head” because that’s just not how I am. They knew there is no way I would choose to stay in bed all day if I didn’t have to. I have had very few people in my life not take learning about my illness seriously. This was true even back when the diagnosis was Chronic Fatigue Syndrome, not POTS. Even better, these people see me before they see my illness. I am Jackie, hard worker, stubborn, funny, and loving. I also have a disability. This is the opposite of what it could be when most people see your disability (wheelchair, deformity etc…) before you. In this situation, I am someone with a disability whose name is Jackie and works hard, is stubborn, funny, and loving. See how rather than a whole person who happens to have a disability, people can make you to be a disability who happens to be a person?

I’d much rather be known for other things than my illness. Not always needing a wheelchair allows people to see me for who I am. They don’t get to know I have a disability until I let them know. Of course, sometimes I have to let them know. For example, when I need to sit down on the floor in a store or something, it’s pretty obvious something is wrong. When we were looking for houses, the landlord would ask me questions about myself. We’d get chatting, laughing and all that good stuff. They’d ask if I went to college and I’d tell them all about my passions. Then, they’d ask if I work. I said no and briefly explained POTS. Every single one of them told me they were sorry that I lost all I had built for myself throughout college. If I’d rolled in, in a wheelchair, most people (though I’m sure they don’t recognize this in themselves), would ask many less questions about my interests and past. They’d be focused on the fact I am in a wheelchair and that means something is wrong with me. I know this based on experience going places in a wheelchair versus walking.

So while I’m not saying having an invisible illness is the preferable thing to have, I do believe in my life it has had more perks overall than having a visible illness would. The preferable thing would be to not be disabled and to never have to explain my illness to anyone!

P.S.: I know there are people out there whose family don’t take them seriously and they haven’t yet found a doctor to take them seriously. To these people, having an invisible illness is a terrible thing rather than the preferable thing I’ve made it out to be. I just wanted to acknowledge that