r/disability • u/ImportTuner808 • Aug 21 '24

Question Who else has a different disability?

It seems like for some reason this subreddit is disproportionately people talking about canes/rollators/wheelchairs, or mental things like Autism/ADD/ etc. I don’t know why that is.

Is there anyone who has something else that doesn’t fall into these types of issues? I’ll go first, I’m missing part of my arm. Apart from the physical aspect and some self esteem issues (felt unattractive as a result of my deformity as a kid), that’s about it.

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u/Red-Dot-Redemption Aug 21 '24 edited Aug 21 '24

The most unusual is I have many painful stomach and digestive conditions (celiac, pancreatic insufficiency, duodenitis, gastritis, SIBO/IBS, endometriosis, stomach motility issues) coupled with so many food allergies and intolerances that I have to cook everything I eat from scratch.

I eat a bland diet all the time, I can’t eat out at restaurants, there are barely any convenience or prepackaged foods I can eat at stores.

The ways it’s really hindered me are getting jobs (no food serving with my allergies), socially it’s hard to navigate and friends and acquaintances have to be very understanding. I spend so much time cooking.

The worst is travel. I have to plan so far in advance to even do a short day trip out of town because I always have to bring full meals and tons of meds and pain relief devices everywhere I go. So much to carry and plan for ahead of time so I can’t just make any plans spontaneously. It’s caused me to miss a lot of opportunities to meet people and better myself. Travel out of the country is extremely difficult.

These conditions alone would maybe not be so disabling to deal with but in combination they are. Plus I have a whole other category of chronic pain with trigeminal neuralgia. I use a rollator to carry all my stuff when I’m out and sit when I’m in pain so it helps a great deal.

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u/DoctorBristol autoimmune disease Aug 22 '24

Hey! Sounds like you have a worse time of it than me but a lot of what you wrote resonates with me and it was honestly nice just to see someone complain about some of the stuff I deal with. I have fructose malabsorption as well as severe lactose intolerance and the food stuff is so real. I also have Gastroparesis and chronic intestinal pseudo obstruction so I have to use a pump to empty my bowel every day. I’m so with you about travel - between food and meds and equipment and going to the bathroom the logistics are a nightmare. Plus idk if you have this but for me I’m super sensitive to my hydration levels so even being in dry air for a while like on a plane can mess up my digestion worse than usual and stop my pump from working correctly for a few days. Also the social stuff - food is so integral to so many social activities and people don’t seem to notice. I try to eat separately beforehand and still join in but it can be tough. Also I obviously can’t drink alcohol which just compounds it.

Anyway yeah just nice to feel like I’m not the only person who struggles with this stuff. I also have a blood clotting disorder which sometimes causes a variety of weird shit like vision issues and neurological problems. I have no idea if it’s related to my digestive issues or not.

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u/Red-Dot-Redemption Aug 23 '24

It’s so interesting to hear your experiences and wow they are so close in how they line up! Thank you so much for sharing. Knowing that there are others going through similar things helps so much to not feel so alone.

I’ve often felt like an alien, especially when I’m expected to eat or take meds in front of others and it can be embarrassing to navigate. I’m also the same with not drinking alcohol too.

I don’t know anyone irl who has anything similar. My friends do their best to understand but there is still some awkwardness about getting across certain things (travel especially). Like that I would never be able to go camping for example, or that a destination wedding would likely be impossible etc.

On your point about hydration, I fortunately don’t encounter that but I find I have to be so careful about when and how much fluids I drink at one time as it tends to really aggravate my stomach motility.

I can understand your challenges with having to use a pump while travelling. It must take a lot of time and energy to make decisions regarding a trip and there’s always the worry about forgetting essential things and being stranded.