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10 Myths About Dysautonomia That Make It Even Harder to Live With

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Dysautonomic is an umbrella term for medical conditions in which the autonomic nervous system (ANS) malfunctions. Since the ANS controls automatic bodily functions such as heart rate or temperature regulation, those with a form of dysautonomia may experience symptoms such as lightheadedness, fainting, unstable blood pressure, abnormal heart rates or inability to regulate temperature. Some of the more common types of dysautonomia are postural orthostatic tachycardia syndrome(POTS), neurocardiogenic syncope and multiple system atrophy.

Although dysautonomia is not rare, as over 70 million people worldwide live with different forms of it, many people are still unfamiliar with the illness and what it’s like to live with it, and this lack of understanding can unfortunately give way to misconceptions or assumptions that are not just inaccurate, but hurtful. Living with a lifelong health condition can already be incredibly difficult to manage. But add on the stigmas and misunderstandings surrounding the illness, and navigating life as a dysautonomia warrior can become even tougher.

We wanted to correct some of the misconceptions surrounding dysautonomia, so we asked our Mighty community to share the “myths” they’ve heard that make it even harder to live with the condition. Breaking down these stigmas is not only an important part of promoting general understanding and awareness, but could eventually lead to more research and better treatment options for those with various forms of dysautonomia.

Myth #1: Only young people have dysautonomia, and they eventually grow out of it.

You are young, most of the young sufferers of POTS will be cured within a few years.” – Aili K.S.

“[People think] POTS is for teenagers and everyone eventually grows out of it.” – Abigail R.

Every doctor so far has told me, ‘Yeah, this is POTS for sure.’ When I ask if there are any treatments we can try, they tell me to hang tight because I’ll grow out of it eventually. Three years later and my symptoms have only become worse…” – Cheyenne U.

Reality: Dysautonomia can affect people of any race, age or gender. One form of dysautonomia, POTS, affects approximately 1 out of 100 teenagers and, including adults, between one and three million Americans. The prevalence of POTS among teens may give some the impression that it is only a condition for young people – but the reality is that even if people develop POTS (or another form of dysautonomia) as a teenager, you can’t assume they’ll “grow out of it,” and there is no cure for dysautonomia.

Myth #2: Dysautonomia only causes a few “minor” symptoms and isn’t “a big deal.”

POTS only makes you dizzy when you stand up. There’s no way POTS can cause chronic pain, fatigue, depression and anxiety. POTS isn’t that big of a deal.” – Amanda S.

Oh it can’t be that bad.” – KellyAnn P.

“[A myth is] it’s just passing out and my headaches and my digestive issues aren’t related and it will get better.” – Laura P.

People don’t understand just how horrible it is. Having a body that can’t control its temperature, heart rate, blood pressure, metabolism, gastrointestinal tract, etc. It’s frustrating to feel fatigued all the time, to have a syncopal episode or near syncope in random places like the grocery store. I don’t want to have to wear a hoodie when it’s warm out but I’m still cold. Feeling cold all the time is so annoying.” – Vanna Y.

Reality: Different forms of dysautonomia may affect different people to varying degrees of severity – but no matter how it affects a person, it is a serious, chronic condition that should never be brushed off as “no big deal.” The illness can not only cause an array of physical symptoms, but have an impact on just about every aspect of a person’s life.

Myth #3: You’ll feel better if you just exercise more!

“‘You just need to exercise more.’ When in reality we’re in a constant state of exercise because of our high heart rates.” – Maelynn A.

“‘Exercise more. You look fine. You can do this and that, so how are you sick? What’s wrong with you? Snap out of it.’ I get enough exercise standing up or taking a shower, doing so I’m hit with a heart rate of 130-168. Looks can be deceiving.” – Hali S.

[People think] dysautonomia is brought on by deconditioning and exercise will help/fix it. I was in the middle of a five-mile jog, one that I did four times a week on top of working out in the rec center at my college, when I passed out for the first time. I was told it was over-exertion first and then deconditioning later, but it took five doctors for them to even discuss something more, and then a sixth to be diagnosed with inappropriate sinus tachycardia and POTS.” – Kourteney K.

Reality: Exercising more when you have dysautonomia does not always equate to feeling better. For many, certain types of exercise can trigger symptoms or even be dangerous to your health. Plus, it’s just not always possible or realistic to hit the gym when you’re in the middle of the flare-up. It’s critical to always talk to your doctor before beginning any new exercise regimens.

Myth #4: Dysautonomia is a heart condition that only affects your heart rate and blood pressure.

I have POTS and it’s common for people, even some doctors, to think it’s all about heart rate and blood pressure. It does affect these, but it’s so much more. I deal with symptoms like heat intolerance, inability to regulate body temperature, pupil dilation, sleep difficulties due to overproduction of adrenaline, sensory sensitivity… The autonomic nervous system controls so many things.” – Caitlin W.

[A myth is that] POTS isn’t a heart condition – influencers keep calling it a heart condition to make it easier for people to understand, but all it does is confuse what POTS is in the long run! It’s autonomic dysfunction, dysfunction of the system that controls your heart rate. If POTS is all you have, then your heart is perfectly fine, it’s just getting the wrong signals.” – Caitlin P.

I’ve had the same experience that others mentioned with doctors thinking it’s solely an issue with heart rate and blood pressure (especially at the ER). I think part of it is in the name itself for POTS in particular since it says the words orthostatic and tachycardia. I’ve been trying to refer to it as dysautonomia more, rather than specifically “POTS” since dysautonomia alludes more to the fact that it is a dysfunction of the entire autonomic nervous system, since it all overlaps after all!” – Rachel D.

Reality: Dysautonomia refers to dysfunction of the autonomic nervous system – not a heart condition. The ANS is supposed to regulate automatic bodily functions, which includes things like heart rate and blood pressure, so ANS dysfunction may affect the heart. However, in speaking only about dysautonomia, the heart is not the root of the issue.

Myth #5: You can keep your symptoms totally under control by drinking water and consuming salt.

A lot of people say, ‘oh just drink some water and eat lots of salt and you’ll feel better.’ I have to get daily saline IV fluids at home through a central line just to be able to function and survive. It’s not so simple that you can just drink and magically be cured.” – Abby B.

“‘IV fluids don’t help with POTS, just drink some water.’ Yes, I can totally drink water while I’m passed out. Plus with GP [gastroparesis], and not being able to drink or eat anything, right.” – Charmane S.

A doctor once told me her son also had POTS and all he did was eat chips and was better so I just needed to eat more chips and I’d be better…” – Nisa K.

If I just drink tons more, ‘all my symptoms (and my POTS) will go away.’ I don’t absorb liquids properly. Drinking tons more will just make me have more frequent trips to the bathroom. Increase fluids – yes. Drown my system – no.” – Darah M.

Reality: Those who have POTS, especially, are often recommended to increase their fluid and salt intake in order to increase blood volume, which tends to be low in POTS patients. This has proven to be helpful with blood pooling, hypovolemia or hypotension. However, that does not mean that simply drinking a bottle of water and eating a bag of salty chips will help someone experiencing severe symptoms instantly feel completely better. It may help, but it is not a cure-all. Additionally, every person is different, and so consuming plenty of water and salt may not look the same for everyone. Some may need to receive fluids intravenously instead of orally, for instance.

Myth #6: Dysautonomia is “all in your head.”

“It’s not all in our heads. [My PCP] insinuated my digestion issues were all in my head, as were my heart rate problems and my sleeping issues, and my blood pressure problems. It’s frustrating because some doctors tend to not believe that POTS is real, when it really, really is.” – Saylor A.

Reality: Dysautonomia is a very real and serious medical condition, and those who have it are not making it up, and it’s not “all in their heads.” Each form of dysautonomia produces unique symptoms and side effects, and those affected deserve respect, understanding and proper medical attention.

Myth #7: You can’t be that sick today if you were just feeling great yesterday.

Just because I looked healthy and had energy yesterday or even an hour ago doesn’t mean I have energy now.” – Athena M.D.

Just because I’m feeling OK one hour doesn’t mean that I’ll be feeling the same by the next hour.” – Shannon B.

Reality: Dysautonomia can be highly unpredictable and may often fluctuate day to day, even hour to hour. A person may feel pretty decent one day, then wake up in a giant flare-up the next morning. It can be hard to plan ahead and know what to expect from the condition.

Myth #8: People with dysautonomia are just exaggerating and being melodramatic.

“When I faint, [it] isn’t because I’m melodramatic or seeking attention, it’s my system shutting down and rebooting itself and it may take more than just a couple of minutes…” – Melissa O.

“What is almost as bad as the symptoms is the never-ending looks people give you like you act sick for attention… Trust me when I say, not the attention I want.” – Hali S.

“My heat intolerance is just me being ‘whiny’ or ‘exaggerating.’ You can say that all you want until you deal with me contracting a migraine attack or going into heat exhaustion from weather other people consider ‘nice.’” – Ella B.

Reality: The symptoms of dysautonomia are serious and may often be debilitating. If someone is expressing how they feel, they deserve to be met with compassion, not judgment.

Myth #9: Dysautonomia is completely harmless.

“‘POTS won’t kill you, it won’t even harm you,’ says the doctor/person who hasn’t had seven concussions in the past year. It may not kill me directly but the fainting and hitting my head too many times might, and my whole body always hurts from my POTS.” – Destiny M.

Reality: Dysautonomia can have a significant impact on your health, and, depending on the type, the individual and other comorbidities, it can be fatal. Each form may affect your body in different ways – some more direct than others – but dysautonomia is not completely “harmless.”

Myth #10: You’re “lucky” if you can’t work full-time, or if you need to work from home due to dysautonomia.

Because of my POTS and other syndromes… I can’t work a full-time job. I can do some work from home and people constantly tell me I am so lucky to get to work from home. I would love to be able to leave my house and have a job and meet people and have friends. But they only see that I get to work from home in my pajamas.” – Brittany R.C.

Reality: If a person with dysautonomia needs to leave their full-time job, start working from home or make other major changes surrounding their career, it doesn’t necessarily mean they’re “lucky.” For many, working is an important source of income, identity, socializing and drive, and to lose any part of that can be a difficult thing to grapple with. If a loved one has to make lifestyle changes due to their illness, it can mean a great deal for you to lend a listening ear and offer your support and encouragement.

Originally published: July 9, 2018
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