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12 'Embarrassing' Symptoms of Dysautonomia We Don't Talk About

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Dysautonomia is a term that includes several different conditions (the most common are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope) caused by autonomic nervous system malfunctioning. The autonomic nervous system controls a variety of functions in our bodies, like heart rate, blood pressure, digestion and temperature regulation, so the symptoms of dysautonomia can be wide-reaching — and, occasionally, perhaps a little embarrassing. It’s not always easy to deal with things like passing out in public or frequent sweating. If these things cause you some embarrassment from time to time, that’s perfectly normal.

No one should ever feel like they have to be embarrassed about their body or health condition. And if you’re thinking back on your dysautonomia symptoms now and realizing you’re not actually embarrassed by any of them, that’s valid, too! But for anyone who’s felt that twinge of shame as a result of a symptom, check out what our community said when we asked them to share the “embarrassing” symptoms of dysautonomia we don’t talk about.

Hopefully, by opening up about these symptoms, we can help support others in our dysautonomia community, and break down the stigmas around the condition.

Here’s what our community told us:

1. Incontinence

“Incontinence is absolutely mortifying when you’re only in your 20s! It’s even more inconvenient because the #1 treatment for POTS is to drink large amounts of water, but the more you drink, the more you need to wee. I’m glad mine is under control at the moment, but it has been bad in the past, and I know it will get bad again in the future.” — Ella R.

“I have stress incontinence, had it at 15 years of age and thought it was just normal. I’m 31 now. Having an incontinence pad move out of place right when you start coughing is an absolute nightmare.” — Kathryn M.

I have bladder incontinence that my doctors believe is related to my dysautonomia. It’s embarrassing as a younger woman to worry if I’ll need extra pads or possibly an incontinence diaper when I go out in public so that I don’t get urine on my clothing.” — Megan B.

2. Syncope/Fainting

“Syncope — there’s nothing more embarrassing, scary and vulnerable than not being able to stay conscious because I’ve been standing, sitting up, walked too far, had blood drawn, experienced pain or anxiety. Thanks to social media and the drug crisis I’m now paranoid my passing out will go viral as something it’s not.” — Ern L.

“Fainting at the worst times. When I was in high school I was rehearsing for a play and fainted and fell off the raised stage. I was so embarrassed.” — Unity M.

3. Brain Fog

“Memory loss and brain fog. It’s embarrassing to have to pause to (hopefully) remember my birth date, phone number, social security number, address and other basic information when people ask.” — Kelliann G.

“Brain fog. People think you’re incompetent for being forgetful unless you’re able to explain POTS to them. And even when you do, some think you’re a hypochondriac.” – Desirae L.

“Losing words and saying things wrong (I once told the IT man that I ‘loved him very much,’ instead of thank you!” — Lissa M.

4. Near-Syncope

“When I almost pass out or am visibly winded (or having heart rate issues) from something simple like walking up stairs or down a hallway, people just assume I’m super out of shape. I had to sit and breathe in an auto shop once after dropping off my car, and the guy had to stifle a smile as I had just walked across a small parking lot. Super embarrassing, I wanted to cry.” — Sarah K.

“The feeling of almost passing out is terrifying. My entire body tingles and my vision looks like a TV screen but I’m still aware of my surroundings and can feel myself sinking deeper into a loss of consciousness. It keeps me from going out because I don’t want it to happen in public.” — Rachel G.

5. Exercise Intolerance

“People look at me and assume I am winded and my heart is racing just because [of my weight] when that is not the entire case. I get winded and my heart races because of misfiring of my autonomic nervous system. I was shamed my entire life. It was kind of a relief when I was diagnosed.” — Donna-Jean I.

6. Excessive Sweating

I sweat a lot, especially under my armpits, and the odor is embarrassing. But no matter what I do or what the weather is, I can just be dripping in sweat.” — Tiffany L.

“Sweating! Waking up and you have a large circle of sweat on your bedsheets. It looks like you peed the bed and you really didn’t.” — Melissa T.

7. Fatigue

“Fatigue for sure. It’s hard when it feels like I don’t even have the energy to go out to eat with [my] family. It also seems like lately once I hit a wall of being tired in the evening I’m done —  all I want to do is go to bed. It can be 8 p.m. or 11 p.m. It just depends.” — Rebecca P.

8. Dizziness/Lightheadedness

“Standing up and looking like you’re about to fall over because you’ve briefly entered an alternate dimension simply by changing positions.” — Kristy G.

“Dizziness/lightheadedness because I often look drunk just trying to walk and I don’t drink alcohol at all.” — Kristina K.

9. Difficulty Regulating Temperature

“Being ridiculously hot or cold regardless of the weather or environment is annoying and makes people think you’re crazy for wearing jumpers when it’s hot, yet you can’t feel your toes or fingers.” — Pandora P.

“I wear a lot of sweaters in the Texas heat because I can’t maintain my body temperature.” — Christa R.

10. Having to Sit Down Unexpectedly

“Having to sit on the floor in <insert various shop names> when you stand up after getting something from the bottom shelf… regularly.” — Victoria P.

“Having to stop and sit down in random places because my heart rate has jumped too high and I feel like I’m going to pass out.” — Sarah B.

“Either having to sit down in the middle of the grocery store… or the dreaded incontinence. Both are very embarrassing for a healthy looking 21-year-old.” — Hannah D.

11. Gastrointestinal Issues

“I get terrible gas and stomach upsets. It can be really embarrassing when you involuntarily pass gas in public or have to run to the loo mid-conversation. I hate having to use public toilets. I will use disabled toilets because I don’t want to go with other people around. I have actually been laughed at because I was rather noisy (if you know what I mean) when going in a public bathroom.” — Jaz H.

“Having slow gut mobility requiring a feeding tube. I get looks in public on my tube that comes out of my backpack into me. When I have to flush in the bathroom, people stare.” — Elisabeth W.

“Vomiting at any given time. I got so used to it I used to just be sick in the street and carry on. People would think I was drunk.” — Tara B.

“I have severe irritable bowel syndrome with chronic diarrhea and I have POTS; these two don’t like to cooperate. If I suddenly need the loo and I’m sitting or lying down, I have to factor in the time taken for my body to react to the change of position before I can make my way to the loo. Cue the panic that I may have an accident because I can’t get to the bathroom quick enough (I also have hEDS and have to use a walking stick because of a numb left leg and and hip/back problems so I’m already slow enough!).” — Kelly-Marie P.

12. Poor Circulation

“The visible effects of poor circulation. My feet would always turn very deep purple and people always made a big deal about it or compared me to a Smurf instead of just ignoring it like I had wished they would.” — Hailey R.

“I have really bad circulation, so when I get cold my arms and legs turn blue.” — Christa R.

Originally published: January 31, 2018
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