They call it an invisible illness for a reason: it's not something you'll see when you look at me. There is no external physical affliction that will alert you to the fact that anything is "different" about me. However, this is indeed a physical condition, and there are parts of day-to-day life that are a little more difficult for me than they may be for you.
October is Dysautonomia Awareness Month, and I want to say something due to the lack of understanding surrounding this condition. Dysautonomia is the umbrella term for the malfunction of the autonomic nervous system. My form of dysautonomia (are you ready for more long words?) is called neurocardiogenic syncope, or NCS for short.
I'll stop speaking medical lingo now and explain to you what this means. This means that I have issues with balance, vision and mobility. This means if I stand or turn too quickly, I can lose my balance or feel dizzy and promptly need to sit right where I'm at. This means I have balance issues and have trouble walking in a straight line, and I sometimes even start wavering just standing still.
This means I have a death grip on the railing when I'm on stairs. When I'm in elevators, I like to stand in the corner so I can feel walls on both sides of me. That way, I don't experience a free falling or shooting upward sensation.
This means I experience brain fog. Sometimes I forget how to use the microwave, or the shower. I can stop mid-conversation because I "lose" words, and I'll stare at the person blankly until they remind me what we were talking about. I put things in places that make absolutely no sense, and I have no recollection of doing it.
I can't tell you how many times I've heard "you're too young for that" when I try to describe this to anyone. I apparently can't possibly have health problems since I'm in my 20s and look fine. I must just be stressed, or I don't eat right, or there's some other perfectly logical explanation. News flash: This IS the perfectly logical explanation. We all have our battles, and this is mine. Just because I look capable doesn't mean I always am.
There are 85,758,975,974 worse things in the world. The last thing I want is pity or sympathy. What I DO want is SUPPORT. If I ask for help or say I'm struggling, I don't want to be told "oh, just do it yourself, you're fine." That's another one I heard recently. A person said this like it was supposed to be encouraging, when really it was very condescending and made me feel like they were addressing a small child that they thought was just trying to get out of a task. Again, I'm not always capable.
There are things that have improved. I have hope. With support from loved ones, I'll have even more.
#DysautAwareness
