Chronic Illness and Invisible Illness

 

Image description: the back of a blue T-shirt with stick figures. Most of them are standing, but Stick Dude in the middle is passed out. Text reads "It's an invisible disease... until you're passed out on the floor."

Image description: the back of a blue T-shirt with stick figures. Most of them are standing, but Stick Dude in the middle is passed out. Text reads “It’s an invisible disease… until you’re passed out on the floor.”

What I was sitting down to write was to share my chicken noodle soup recipe. That’ll come later, don’t worry. But what happened instead was another post. So is the life of a spoonie blogger. Such is the life of ADHD. ­čśë Wait, what was I saying?

Anyway. Many of my disabilities are visible. I switch between a walker and crutches, and rarely a wheelchair. But I do have several invisible ones. One of the worst ones, for me, is dysautonomia.

What is┬ádysautonomia, you ask? That’s an awfully big word. Let’s break it down! Upside inside out, living la vita┬ádysautonomia! Yeah. That. ┬áHere’s┬áa helpful link telling what it is in oh so awesome medical terms. Yay!

What does it mean in Nora terms? Well, it means my blood pressure often runs dangerously low. ┬áNumbers like 84/50? Perfectly normal, for me (Note: MAY NOT BE NORMAL FOR YOU. If you do not have a medical care team or a DX, please seek help if your blood pressure drops that low! Dat’s low. Dat’s bad. Any who). My heart rate runs super high – 120 at baseline? Not unheard of (again, please seek medical advice if this is not your norm.) Wanna know what happens when low blood pressure and high heart rate combine? You pass out. It’s happened at home. It’s happened at friend’s homes. It’s happened in the Target check out line. It’s happened many places. It’s part of the reason I use mobility aids, though by far not the only one.

I can’t treat it. In my case, the medications to treat it would not play nice with my asthma meds, so they aren’t an option. I have to have a high salt diet, in a feeble attempt to keep my blood pressure up. It doesn’t work well, but, well, I like salt so at least I don’t have to feel bad for ingesting so much? ­čśë

This is one of my invisible illnesses. This is one of the ones that gets me called lazy when I take elevators or refuse to take stairs. When I have to suddenly sit down. When I have to use the electric scooter at Target or Walmart. This is the one that gets me stares and judgement. Because, after all, I shouldn’t need those things, right?

It may be invisible. But it doesn’t mean it’s not hurting me and it doesn’t gravely affect my life.

2 thoughts on “Chronic Illness and Invisible Illness

  1. Dysautonomia is one of the illnesses I struggle the most with to get people to understand. They can see me dislocate an elbow or my shoulder, but no one can see my heart rate go up and my blood pressure drop. Doctors used to tell my mom that I was fainting for attention! (How do you faint for attention anyway?) That being said, it’s also probably the most debilitating of my illnesses. Thanks to braces and pain medication, EDS is a thorn in my side, but I can get around it. Dysautonomia? Nope. No medication has fixed it, no lifestyle changes….ugh. ­čÖü

    • Yep, I got the “fainting for attention” too! Such bull. Yes, I REALLY want to be a Nora-puddle on the floor…

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