20 People Describe What It Really Feels Like to Live With Dysautonomia

Dysautonomia is a difficult condition to explain to friends and family, especially since symptoms can vary from condition to condition. You simply “don’t get it until you get it.” Dysautonomia Support Network asked our members, “What does it feel like living with dysautonomia?” in the hopes of generating responses that were transparent, honest, and helpful for caregivers, family members, and friends. Their answers blew us out of the water with how much it resonated with our community, regardless of whether they had POTS, Ehlers-Danlos syndrome, Chiari malformation, mixed connective tissue disease, or another condition. We hope that these answers will help foster a conversation with your loved ones one what life with dysautonomia feels like for you.

1. “It feels like a roller coaster you can never get off of. Being judged by the world for looking normal when inside you are anything but.” – Susan B.

2. “It is not ‘You don’t have to work!’ Instead it’s more like ‘I can no longer feel productive.’” – Beth S.

3. “Like you’re a prisoner in your own body (especially with not being able to drive since my spells seem to kick in then). Never knowing what you will be able to do one day and not be able to do the next day without problems.”  -Beth P.

4. “It is like living in an awful TV soap opera. You think things cannot get any worse, or you have seen everything, but then a whole new level of series of events happens. The worst part is that you do not get a break; there’s no option of changing the channel or turning the television off. There isn’t even a pause button. You just have to keep going through it all with no breaks. It is exhausting and drains you in ways you did not even know were possible.” – Jo C.

5. “Living with dysautonomia is like running full speed on a treadmill while standing still with lead weights tied around your ankles.” – Ariel A.

6. “It feels like you’re stuck in an unfamiliar body that’s always throwing a temper tantrum. You can’t control what your body does. You try to tame it, but some days you’re just too tired to fight and give in. Other days you’re determined to show it who’s the boss.” – Arianna L.

7. “Standing is a 50/50 shot of whether it’s all going to ‘go black’ for a few seconds, and every time, I swear, every single time I have a moment of fear my vision will never come back! Once it does, it’s a 75 percent chance that I am going to wobble for a few seconds and a 25 percent chance I’m slamming into a wall because I didn’t quite catch my balance! I’m used to it…my family isn’t.” – Alexandra M.

8. “I’ve described it to people as waking up with the flu, running a marathon in 100-degree humid weather, working a 12-hour shift unpacking the truck, and then running another marathon.” – Yasmin W.

9. “It’s like when you try to do too much on a computer and have too many things things open at once. Your first warning is when it freezes and then you can simply shut down and restart and be back to work quicker. Or if you continue to push and keep going, it might crash or overheat and it’ll take a lot more effort to get it functioning again. Or you simply forgot to plug it in and the battery’s dead again. Meanwhile, all of your friends computers never seem to malfunction, and it makes you feel like you’re doing something wrong. You apologize over and over again before you finally give up and start making excuses for why you couldn’t finish something. You feel like you’re always repeating yourself when saying, ‘Yes, I really do need to get it fixed, but every person that’s look at it has told me that there’s nothing more they can do and I shouldn’t try to do so much at one time.’ Just like humans, computers have their good and bad days. We just have to roll with the punches and solve problems as they arrive. Even the strongest antivirus can’t fix all of our computer’s problems, just like all doctors/medicines can’t solve a person with dysautonomia’s problems.” – Allie L.

10. “It feels like I wake up every day in some strange body; not the one I was born with and lived in for 46 years. It’s like I woke up one day in a body that simply doesn’t work.” -Tina F.

11. “It’s hard to describe the feeling of your body constantly running a marathon. I can wake up, feel pretty good, make a cup of coffee, and by the time that coffee is made, I’m getting hot flashes, dizzy, nauseous, shaky, heart racing and pounding, feeling really weak, all my muscles hurting all at once, and ending up sitting on the ground trying to catch my breath with tears in my eyes. It straight up knocks me off my feet. It is like your body on the outside is a beautiful calm, sunny day on a beach while, on the inside an Ef4 tornado is hitting with no warning. Nobody can see the violent storm going on inside, but you definitely feel it.” – April W.

12. “I guess one word that would sum up all the symptoms is debilitating. It is a life-altering condition that makes normal, everyday activities very challenging. I often feel like my body has given up and no amount of sleep, healthy eating, supplements, working out will make it function properly. While the condition is not a blessing, I think a blessing could come out of it in that I will be a better version of myself for having gone through it.” – Corinne S.

13. “One minute you feel good with lots of energy. The next minute you feel like you’ve been hit by a mack truck, and really sends your body into a tail spin. It takes a while to recover.” – Melissa S.

14. “Some days I feel like I did an Iron Man hungover, carrying a Fiat on my chest.” – Maeva C.

15. “The staff at the local Walmart have come to recognize me and when they happen upon me in an aisle and see me trying not to pass out, or having already passed out, they bring me something to sit on until I’m feeling well enough to stand up again.” – Heather W.

16. “It’s hard to describe, but it’s like you’re in a constant battle with your own body. It sometimes feels like you’re trapped underwater and not able to breathe, especially when your symptoms are at their worst! Then there is the feeling like you’ve run a marathon but are stuck in a loop and your muscles are cramping and you experience muscle spasms that don’t appear to ever go away! Then there is the, ‘Oh, you don’t look sick’ quote that people seem to say to you over and over.  I say to that ‘I maybe putting a smile and brave face on things, but inside it’s a completely different matter!’” – Katherine B.

17. “Inconvenient is one [word] I’ve been dealing with. It seems like the illness itself is inconvenient. The symptoms can worsen at inconvenient timing.  I feel like I’m inconvenient to people and people also have treated me like I’m an inconvenience.”  – Lyssa A.

18. “I am a strong woman, I’m tough, I have done things in the past and dealt with hard situations as a nurse and in my personal life. Dysautonomia is a thief of dreams, joy, stamina, identity, time, health, life! It’s like a cruel little creature, sneaking around in the dark waiting to take you somewhere you don’t want to go! It’s one of the clubs no one wants to join!” – Loretta F.

19. “Trapped in my own body. I’m young and want to go go go and get things done, even if this just means doing a load of laundry or vacuuming my house, but dysautonomia doesn’t let me do that. I’m at the mercy of my own body, as I struggle against what my body wants to do (pass out) versus what I want to do (live a normal life).” – Laura T.

20. “I feel like I have smoked for 40 years. After walking across the parking lot my lungs struggle my heart races, my brain struggles trying to get enough blood to keep me from passing out, my vision sees pretty lights. Then I remind myself I’m 29, and that I shouldn’t feel like I’ve chained smoked and then tried to run. Really I’ve never smoked and I’m only walking.” – Alicia D.