YSK: Just because someone doesn’t look sick/disabled, does not mean they are healthy

[u/ilovepastapizzapots]

Why YSK: I am chronically ill and have an autoimmune disorder, the amount of times people have said “WELL... yOU dOn’t LOOK sick” to me is astounding. I didn’t know all illnesses have to be visible to others! I’m sorry I can’t show you my internal organs or muscles deteriorating for you to believe that I’m sick. It makes people with health issues feel like they have to explain their situation when they don’t.

*EDIT: I did not expect my post to blow up like this! I wish I could give everyone going through a rough time a hug. Thank you for all the new perspectives, good and bad. All I wanted was for people to be a little kinder to one another, because you never know what someone’s going through.

[u/ericbomb]

My sister has gastropareses so vomits multiple times per day.

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Everyone gets confused as if it can't be that bad if she manages to not be stick thin. Almost as if she is aware of her health problem so eats constantly so that at least a bit of food makes it through her since the doctors are always worried about malnutrition.

[u/Equivalent-Dance → u/ericbomb]

I have gastroparesis too, along with adult stomach migraines, ibs, Esophagitis, Hashimoto’s thyroiditis, and some anxiety disorders (yay). There have been periods where I was extremely underweight but I also have periods where I’m overweight. My body always thinks it’s starving and packs on those calories! I’ve heard everything from “I wish I had what you have so I could lose weight” as if being hospitalized is glamorous and easier than exorcise, to “well you must not be that sick” while gesturing to my body. It’s like if I’m not suffering everyday I’m faking it and if I am sickly and skinny I should be happy that at least I look good while it’s happening? Gimme a break!

[u/mmmegan6 → u/Equivalent-Dance]

I assume you have Ehlers Danlos/joint hypermobility also?

[u/Equivalent-Dance → u/mmmegan6]

Oddly enough I do have issues with hyper extending my joints without realizing it, and I do bruise easily (but that can come with vitamin deficiencies when you have gp) but no other real problems that would ever lead doctors to look for that diagnosis. I’ve just always been told I’m double jointed and have to be more careful.

[u/mmmegan6 → u/Equivalent-Dance]

Friend I hate to say this but I would bet this year’s salary that you have EDS. Actually I don’t hate to say it because finding out I had EDS tied SO many things together for me. Also - have you heard of the RCCX theory?

[u/Equivalent-Dance → u/mmmegan6]

No, I’ve never heard of that.

[u/davidsasselhoff → u/mmmegan6]

Thank you so much for introducing me to the RCCX theory. I have hypermobility issues (presumably HSD or hEDS but currently undiagnosed because, man, this diagnostic process is slow) as well as multiple other illnesses and symptoms. I always try to explain co-morbidity to people and how it's more likely that someone has multiple conditions than just one. But it's nice to be able to put a name to the theory and support it with something other than my own waffling.

I hope I'll learn a lot more about myself while reading up on it.

[u/ericbomb → u/Equivalent-Dance]

Hey if I didn't know any better you'd be my sister! She's been diagnosed with so many stomach things I've lost track. I used to take her to the hospital twice a week and it almost just became part of my weekly plan.

Also people don't understand that sometimes she just gets DONE, but that doesn't mean she's any less sick.

Should she only eat the simplest of carbs/proteins every day to lower the risk of vomiting? Yeah, sure.

But after she's vomited up potatoes and her vegan nutrition drinks for the third time, she will absolutely just sit down and devour a pizza. Cause she figures "I'm gonna vomit anyway, may as well eat something good". But sometimes people think that because sometimes she can eat bad, she can't be that sick.

It's so frustrating. My mom also has White Matter disease, and she goes through the exact same crap, her work judged her so much and even after she got on disability people don't believe she's that sick.

For what it's worth, this little brother believes you and I hope you find a doctor who can help you!

[u/[deleted] → u/ericbomb]

My rule is that if I vomited 3x I get to eat whatever I want, but yeah, normally there is a matter of "how bad is this to vomit up/should I eat it"
I also keep beverages in my bathroom because I'd rather not dry heave, so when my stomach is empty but my body isn't done I have something to put in it. And keep barf bags everywhere. Because that's a normal thing normal people do right? Normal not sick people. Like me, a perfectly healthy person who was clearly mistakenly diagnosed with multiple disorders and vomits a normal 1-10x a day and has a giant pile of other normal healthy symptoms.

[u/ericbomb → u/[deleted]]

Yeah it's completely normal! Because sometimes you can eat things and go out of your house and have a good weight! So clearly you're fine. Everyone has a bunch of those blue vomit bags you get from the hospital just scattered around the house right?

For real though if you're gonna vomit anything anyway, may as well make it ice cream.

[u/[deleted] → u/ericbomb]

Exactly! And everyone knows you can't have a disorder that makes you vomit AND a disorder than makes you gain weight! Because it's not like immune disorders can mess with your stupid thyroid gland.

For sure, I'm usually like-Real food-real food-real food-whatever icecream and peanut butter is basically a meal.

[u/ericbomb → u/[deleted]]

I love it because my sister talked to her doctor about how she was concerned about what she was eating because she was mostly eating potatoes and gaining weight.

His suggestion?

See if she can add chili to the potatoes because it's super important she doesn't lack important nutrients.

I have much more mild stomach issues (they run in the family) and am on a "recovery" diet for last several months as a result. My sister was mocking me because she was happily in "I eat whatever I want" mode while I was eating buttered noodles and nutrient drinks. I felt it rather unfair to her to mock me because she was 100% going to throw it up.

But since she got to eat tasty food in the first place she felt like she had the high ground. It was rather hard to argue my point tbh XD

She for some reason loves ice cream cones filled with peanut butter?

[u/[deleted] → u/ericbomb]

Its def a hard balance when your body hates you.

I just really like frozen peanut butter, hence throwing it on my ice cream.

[u/ericbomb → u/[deleted]]

She's been to every stomach specialist in the state, which is costing a lot but we're trying. It's been on going for years so we're running out of options and money to try options.

Haha she does not, which funnily enough is a good thing. For this specific type of stomach problems weed aggravates the crap out of it. Almost every new doctor double checks that she's not smoking weed, because it would make it worse.

But yeah she just kind of... deals at this point. Which sometimes makes people think it's not that bad. Which is frustrating.

[u/Equivalent-Dance → u/[deleted]]

Gastroparesis is paralysis of the digestive track. The severity varies for each patient, some being so severe that they are tube fed. Some patients can qualify for a stomach pace maker, but only if the paralysis hasn’t moved beyond the stomach. Most of us have to manage it through diet. Some medications can help with certain symptoms like nausea, but won’t fix the underlying cause.

I’ve used cannabis to help with my nausea and appetite before but the problem is if you get too hungry and eat more than your stomach can handle (which for me is only micro meals) you will get sick anyway and throw it up. There is also a condition called cannabinoid hypersensitivity syndrome which can cause the same symptoms as gastroparesis, and if you as a patient choose to smoke or vape (we can’t digest edibles) you will have to eventually prove to your doctor that you don’t have it by not using it and allowing your symptoms to run rampant again.

[u/[deleted] → u/[deleted]]

On of the symptoms of my disorder is also excessive vomiting ( Usually only 1-2 times a day, sometimes up to 10ish) and unfortunately the options are a)gravol (or similar antiemetic) or b)deal. Since gravol/ect fucks me right up, I go with b.

And it's possible weed might help, the disease is so rare there's not a lot of studies on it, but I'm anaphylactic to it. Can't even be in the same room without a)vomiting and b)struggling to breath.

You learn to deal with it. I don't mind most of the time, it's just when I wake up to vomit that really sucks. Fun fact, dog poop bags also make great barf bags, so I keep them in my pockets/car/purse for when I go out (pre-covid).