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22 Things People Don't Realize You're Doing Because You Have Dysautonomia


Living with dysautonomia can be difficult and often those with it must adapt in unusual ways. We asked our members what things they do to survive their day-to-day that people don’t realize is because they have dysautonomia. We were surprised at how many simple ways our members help their symptoms that easily go unlooked by their friends and family. By hearing these stories, we can all get one step closer at understanding and empathizing with all it takes to live with a chronic illness.

1. “I use the table to help me stand, and I leave my hand there for a couple seconds to make sure I’m good before I start walking. I’m also not being rude when I pull one or both knees up and rest my foot on the chair while I’m sitting.” — Alexandra Z.

2. “If someone is sitting next to me I turn my whole body to face them while we are talking. If I have my head turned to the side for too long I start to feel dizzy.” — Alexandra R.

3. “If I’m checking my watch often, it’s not because I’m bored or impatient. I’m checking my heart rate on my fitness tracker because I feel ‘off’ and I need to know if my heart rate is too fast or crashing.”— Jennifer N.

4. “When I pull out my own salt shaker with Himalayan salt while we eat together, it’s not because I’m a salt snob, a salt addict, or I think the food is too bland. It’s because I need so much salt to keep my BP up that I salt everything — even salads, desserts, and water.”— Jennifer N.

5. “I keep my house at a comfortable 67 degrees year round because of severe temperature instability. When a friend comes over or we have guests, I offer complimentary blankets, sweatshirts, and fuzzy socks so they don’t become hypothermic. This is of course while I’m in a tank top and shorts.”— Kimi L.

6. “I wear a Fitbit to track my heart rate, and only for that reason. People see it and think I’m a fitness person, which couldn’t be farther than the truth.”— Erin V.

7. “I sway back and forth or go from flat-footed to tippy toes to get the blood moving while I’m standing still.”— Alexandra R.

8. “Touch my neck to check my pulse and make sure it isn’t freaking out.”— Shy A.

9. “I cut my hair super short to help with temperature regulation.”— Katie D.

10. “I work ahead in school and work, and opt to do group assignments by myself. I don’t know if I’ll have to miss this obligations if I suddenly become ill.”— Shannon R.

11. “I walk around and move about a lot, fidgeting, pumping my leg muscles, when standing. I am unable to stand still for long because the blood goes to my lower extremities and I feel faint. What might look like impatience, restlessness, or anxiety is actually my way of keeping my body conscious while standing. It often takes concentrated effort and deep breaths before I am able to move from a seated to standing position.”— Endurance G.

12. “If I am on Facebook on my phone when I am out or with you, I may be worried about a friend in a procedure, or surgery or in one of my groups, and I am checking on them! No, I’m not *that* addicted to Candy Crush or Dice With Buddies… I am just worried about my friends and waiting to hear for the ‘all clear’ from a major appointment or issue!”— Alexandra Z.

13. “I yawn a lot because of air hunger, not because I’m always tired.”— Faith P.

14. “Planning isn’t a neurotic tactic, it’s what I have to do to be able to do anything. I have to conserve energy in every way possible, including laying out my clothes the night before, laying out meds, and showering the day before. I know my body best. It may not make sense to you that I’m freezing, burning up, exhausted, or missing words, but trust me I’m fighting a war with my body.”— Wendy W.

15. “I’ve become internalized and antisocial.”— Angie B.

16. “I cross my legs in a weird way if I have to stand still for more than two minutes.”— Pauline B.

17. “I wear lots of layers regardless of temps because I freeze one moment (even when it is 80 degrees out) and the next I am sweating from every pore on my body (even when it is freezing out). Constant temperature roller coaster. If I get too hot or too cold it compounds my symptoms.”— Lin A.

18. “I avoid singing and blowing bubbles (I work with kids), wake up three hours early to start my routine so I can safely get out bed, shower at night, avoid standing and talking, use a grocery delivery service, shop for clothes online, the list goes on and on. No one realizes that every single thing I do, I do differently now than before I was sick.”— Lindsey W.

19. “After I stand up, I pause, to make sure I don’t black out.”— Adam S.

20. “I always have something to drink on me, even if I’m out. Water doesn’t cut it, so I try to have a sports drink on me. I have to be drinking constantly so my blood pressure doesn’t drop to the point of me passing out in public.”— Jo C.

21. “I wear a hat on buses with movies playing overhead so the changing light won’t give me a seizure.”— Shannon B.

22. “I take off my coat often and/or under-dress for the season (even in winter), because I can’t sweat properly and also get really nauseous and dizzy if I get overheated even a tiny bit.”— Adrienne S.

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Thinkstock photo by JoeyCheung

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