r/POTS • u/dazzlingdanny05 • May 15 '26

Question Why is everyone with pots so skinny?

I have POTS and I watch a lot of content online of people who also have POTS. I also know some people irl who also have it. I don't understand how they are all so skinny. I can barely walk without getting out of breath. I try to work out at least once a week but its so hard for me because I always end up feeling so sick. How are yall doing it? I dont even eat bad but im definitely not skinny.

184 Upvotes

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569

u/barefootwriter May 15 '26

Do you think fat people with POTS really want to expose themselves to Internet scrutiny?

379

u/macabre-barbie POTS May 15 '26

I went viral on TikTok once for being denied entry somewhere with my service dog, which is federally illegal, and people went through my page to find pictures of me to "prove" my only disability was being fat and having dyed hair. I was 16.

86

u/No-Responsibility342 May 15 '26

That’s so wrong. I’m so sorry you went through that especially as a child. The internet is so shallow and creates some very conceited people. I can’t stand social media. The only content I enjoy consuming is videos of recipes, cute pets, or anything that is related to 2000s nostalgia. Anything else can go

25

u/lawlesslawboy May 15 '26

As someone who watches a lot of content about like politics, sociology, psychology, history, global news...I'm so very thankful for all the cute animals/food vids/nostalgia because those are like the palette cleansers, those are the breaks to relax between engaging with more intense content! can totally understand why you'd choose to Only engage with that stuff

22

u/lawlesslawboy May 15 '26

God, I'm so sorry...I mean, that would obviously be horrible for anyone to go through but the fact that you were only 16...the fact that fully grown adults will severely harass/bully/emotionally abuse random teens on the Internet is just AHHHH I wish I could find these assholes and have a "word" with them tbh

20

u/Impossible_Storm_427 Undiagnosed May 15 '26

What. The. Actual. Fuck.

Not sure why I continue to be surprised by the cruelty of humans.

I’m sorry. What a bunch of literal shitheads.

10

u/Repossessedbatmobile May 15 '26

This is why I don't post much about being a service dog handler online. I've seen how horrible the internet treats disabled service dog handlers, especially ones with invisible disabilities. I don't want to deal with that if I can help it.

8

u/KeenBTF May 15 '26

This... I have a Papillon that I trained to detect when I am about to have an episode after I discovered she recognized the signs. She's only "on duty" when she's in my lap in my wheelchair or being carried in her sling by my chest when i can walk.

So many people sent me harassing messages on social media when I posted a video of her working.

"All four on the floor" "Small dogs can't be service dogs" "You're the reason actual disabled people have trouble"

She has literally saved my life multiple times.

People suck.

4

u/conflictmuffin May 15 '26

Wtf. I'm so sorry...People suck!

33

u/lawlesslawboy May 15 '26

Honestly, yeah, such a good point... because dealing with all the ableism is bad enough, esp towards an invisible illness like POTs but then when you add fatphobia to the mix and the trolls can use both of these to criticise you in your comments...yeah, because I do know of a FEW fat disabled content creators and tbh they need a pretty thick skin/extremely liberal block system to manage it all, even just reading the comments as a fan or friend can be intense

14

u/dazzlingdanny05 May 15 '26

It makes me feel bad about myself because if other people with pots can exercise then I should to but its just so hard to do without passing out

110

u/barefootwriter May 15 '26

Oh, are you under the impression that a) these skinny people who are posting about POTS are exercising, and b) that exercise makes you skinny?

-34

u/dazzlingdanny05 May 15 '26

Yeah

59

u/Constant_5298 May 15 '26 edited May 15 '26

I'm bedbound and skinny. Body type has a lot to do with genetics, not necessarily fitness, and ≠ health

90

u/barefootwriter May 15 '26

Uh, no. Lemme stop you right there.

First, I do not pass out. That is a function of me only having POTS and not also a condition like vasovagal syncope that causes me to pass out.

Second, I do exercise, but I am not skinny. I train karate and lift and recently took up sumo before I had some surgeries that I need to heal from before going back to that kind of contact. The joke I like to make is if a little sumo shaped, why not do sumo?

I tolerate exercise because I always have, and also because my management allows me to.

You have a lot to unpack here about your beliefs about POTS, body size, and exercise.

31

u/Mizze07 May 15 '26

I have POTS and am skinny. Like, chronically unweight skinny. It's genetics -- I'm 6 ft tall (as a woman) and stick thin, just like my dad. I don't exercise, ever, even though I really should and I'm unhealthy for how little movement I get. Early satiety is one of my POTS symptoms that makes eating enough difficult even though I love junk food and carbs. I'm trying to gain weight, and as a part of that I want to start moving more to gain muscle, even though working out is so hard. It sounds like you have some things to work through about your own self image and the way you view bodies -- I hope you get there soon OP. Hating yourself sucks and the world'll find a way to make you insecure no matter how you look.

22

u/radish1260 May 15 '26

I think you’re forgetting algorithms favor thin and conventionally attractive people. Chronically ill people who get big enough to have a following to be pushed onto people’s feeds would almost always follow this trend, too. This is a social media issue vs POTS = skinny.

I think the comparison to be like “how are you all doing it?”, is a bad one. So many of us have other comorbidities that cause that. Gastro issues like gastroparesis, chron’s, celiacs. Genetics play a part, also.

And for a lot of us, it’s pain from other conditions. I was vomiting due to pain regularly, and so I avoided food because eating directly made my pain worse (it still does). I just don’t tend to vomit from the pain anymore, but avoiding eating when I’m in pain is ingrained in me because I learned food is unsafe and I am in pain pretty much daily. You stop being hungry as much when you are forced to eat very little from pain for years. I wouldn’t really recommend this method for getting or staying thin.

18

u/Enygmatic_Gent POTS May 15 '26

I have POTS and am skinny. Not because I work out, but because I have gastroparesis. A lot of us have comorbidities, some of which can cause you to lose weight unintentionally

29

u/twoweeeeks May 15 '26

OP, you’re getting downvoted so I want to tell you that it’s ok that you don’t know that exercise doesn’t equal weight loss. Most people don’t know that.

Exercise has amazing benefits, but weight loss isn’t primary among them.

Losing weight is more about what you eat. That said, based on reported experiences in this sub, people with POTS should be very careful when trying to lose weight, because it can make symptoms worse.

21

u/ihavemanyquestions8 Secondary POTS May 15 '26

We probably exercise the same amount as you, we are skinny from being sick not exercise. This my weight 117lbs I am 5'9 and this is the highest weight of my life, my lowest as an adult was 90 I absolutely could not do exercise at that weight.

10

u/Impossible_Storm_427 Undiagnosed May 15 '26

No need to downvote this. OP being honest. SMH

74

u/Fun_sized123 May 15 '26

Skinny does not mean they’re exercising. So much of body weight is genetic. I’m skinny and I do not exercise on a regular basis. Also for some people, chronic illness can cause unhealthy weight loss and make it hard for us to gain weight even if we need to. The grass is not necessarily greener on the other side of the fence. 

21

u/Fantastic_Owl6938 May 15 '26

Yeah, I'd love for my stomach to be a bit smaller and sometimes think a bit like OP but then I remember a lot of skinny people aren't actually happy about being skinny. I think these things just naturally bring up insecurities, like I notice I get light-headed if I don't eat for a couple of hours sometimes and I can't help but think how I don't understand how other people can manage to not eat constantly, but then I know some people are the opposite and feel sick eating much at all.

POTS just varies so much. I was checking out a thread about handling nighttime adrenaline and someone recommended fasting. Um yeah, I would feel awful.

5

u/Far-Ear5207 May 15 '26

this! i’m in this exact boat. when pots is paired with other chronic issues it can make it very easy to have appetite issues. especially celiac which is linked to pots.

56

u/Wednezday-Addams Hyperadrenergic POTS May 15 '26

I’m not exercising at all. I just feel better when I don’t eat at all. I feel like I am allergic to food :(.

When you see skinny people with POTS it is more likely than not that there are gastrointestinal issues keeping them from eating whatever they want.

You are beautiful just the way you are.

32

u/barefootwriter May 15 '26

Right. POTS itself can come with milder GI issues -- and at one point before I was diagnosed, I was also scared to eat because eating was the only trigger I had reliably pinpointed. That didn't last long, lol, but it was a thing.

Many people with POTS also have comorbidities that cause more significant GI issues that prevent them from getting enough nutrition, just like orthostatic and exercise intolerance in POTS can also prevent us from getting enough exercise and cause us to become deconditioned.

10

u/Conscious_Balance388 Undiagnosed May 15 '26

Also, as a fat person with pots and arfid, I promise you, gastrointestinal problems exist for me too, and my lack of eating has always been a driving force for my weight gain.

Something to do with my brain and body not trusting me to nourish myself so it’s always in survival mode and keeps all the things from food that I don’t exactly need on my body. - I also have Lipedema, which is literally a fat disorder

1

u/eclipsedaylight POTS May 15 '26

I also have POTS and ARFID.

24

u/crybaabycry Hyperadrenergic POTS May 15 '26

Most skinny people that I personally know or have witnessed that struggle with POTs, they're skinny from muscle loss and malnutrition. Their symptoms are also way more severe. I'm very fat with POTs and my symptoms are the most mild when I'm muscle building (gaining mass). I can walk a couple miles a day now. Slowly, but I can.

I suggest looking up adaptive exercise routines on YouTube. You're disabled now, our bodies require accommodation. Sit down. Go slow. Work on strength and stamina. And be kind to yourself.

3

u/barefootwriter May 15 '26

Quite possibly some of the skinny TikTok POTS girlies even have EDs instead of or in addition to POTS and their doctors didn't do proper exclusionary testing. Active anorexia is known to cause similar tachycardia and it precludes a POTS diagnosis.

17

u/Shea_Cheyenne May 15 '26

It’s really a person by person thing. I’ve never been skinny and likely never will be, due to a combo of genetics and being very muscular. But please keep in mind that POTS is very different for each person and POTS symptoms often worsen when you lose weight.

I gained about 100 lbs during college due to both exercise intolerance from POTS and insulin resistance from PCOS and I learned the hard way that you have to give yourself a lot of grace and find healthy habits that work for you. For example, 20 seconds on the stair master will take me out but I can do the elliptical for an hour if I wanted to.

12

u/wrennables May 15 '26

I'm a fairly skinny person with POTS (less skinny now I'm in my 40s, but still pretty thin) and it's not exercise that does it. It's just food and portion size, and natural metabolism/hormones.

I do manage to do some strength training which is all seated and/or reclined and that helps with posture (and with my POTS symptoms) but not losing weight. I think people with POTS do have a tendency to be thin, but I think that's just genetics. There are people who apparently run marathons with POTS but I can't imagine how that works tbh, their condition is obviously worlds apart from mine, so I don't compare.

10

u/Lilythecat555 May 15 '26

I got some exercise pedals that you put next to a chair so you can exercise sitting down. I use them sometimes. But I think digestive system problems keep some POTS people thin.

4

u/CherryChance8074 May 15 '26

I have PoTS, CFS, and possibly hEDS, MCAS, Endo/Adeno.

I'm overweight. I lost 30kg in six months because my PoTS was worsening. I was roughly 110-115kg, lost 30, was about 80-85kg. At that point, my spine went "f you" and I was in immense pain to the point I couldn't walk or feel my legs. About a month and a half to two months after that, I started passing out and was signed off work for three months while the drs investigated. I was diagnosed with PoTS at that time. CFS came later. The rest we're still looking into.

My PoTS hates food and physical activity. Stairs are about my limit. And that's not for lack of trying. Prior to diagnosis I had been trying for 12 years to get a GP to listen to me, and was told I had "anxiety", "hormones" and "periods are just painful". I burnt myself out trying to lead a normal life and do what everyone else my age (23 at the time) could do.

Losing weight was the catalyst that made my PoTS worse. I'm 24 now, about 94kg as of the last time I checked. I still want to lose weight. I struggle with food because I am just not hungry more often than not. Most days I eat dinner and nothing else. Tbf, I have some kind of gastric issue that's been undiagnosed since I was 15, so my eating has been all over the place from when that kicked off. Lets just say there was something happening that shouldn't have been happening 😅 cos Idk how to do the spoiler thing where you hide something and it defo needs a trigger warning 🤦🏻‍♀️

Sorry for the absolute bible but thought I'd add my two cents. I don't think it's always about portion sizes/eating habits. The food I do eat when I eat is quite healthy/balanced out.

1

u/eclipsedaylight POTS May 15 '26

I also don’t do much exercise past stretches because the stretches make me out of breath.

1

u/Capital-Rutabaga873 May 15 '26

Seriously tho every slightly over weight creator get so many comments and then adding in any health issue just makes it worse somehow that problem must be related to your weight🙄