1. "The heinous need to be near a bathroom at all times. You wouldn't think, but so many places don't have bathrooms and it really restricts where you can go and how you socialize. It's very limiting."
"My entire life is planned around if there's a bathroom present, and people don't really consider how limiting that is. I can't go camping, movies stress me out because I have to sit there for the full run or disturb everybody by getting up to go. Driving long distances is a stressful experience — where's the nearest bathroom off the highway if you gotta go? Some random gas station? Will I make it in time? It's better to just stay home, where there's an easily accessible bathroom at all times. I can't go to concerts or games where there might be a line to the restroom because I can't wait that long. Theme parks have the same issue."
2. "How drained you feel when there's a flare up. My intestines were giving me trouble this morning, and I had to take a nap when it was over because bracing against the pain expends a lot of energy."
3. "Not (always) being able to tell when an illness or injury is bad enough to need medical attention. When 'nauseous, fatigued, and in a noticeable amount of pain' is just your constant state of being, it's not easy to know when something worse might be going on or if you're just having a bad flare-up."
"Twice I was in the ER for something else when I was asked, 'Do you know that you have a kidney infection?' No, ma'am, I did not."
"Abdominal pain is just part of my life, and I'm scared that one day there'll be something else wrong and I won't realize it. I just hope I'm so familiar with my colitis pain that I'd notice if the pain was slightly different."
"When COVID hit, I was like, wait, I have those symptoms on/off all the time (including fevers), and if I need to not expose others, then I’m really not safe to go anywhere until I KNOW. I still haven’t caught it, knock on wood, which is great because it would likely kill me. But people still get angry when I explain that recent strains are 20x more contagious than before so yes, both of us wearing a mask matters for my condition"
4. "Accessibility gets talked about, but you know what gets me? Shitty accessibility. For example, steep ramps. Fucking hell, I am not that buff and strong, my shoulders dislocate under force. Your thirty degree ramp is fucking terrifying."
"Those ramps are also horrific for anyone who uses a walker/cane/crutches. Especially if they are sloped in multiple directions or if the pavement is not well maintained. Nearly every time I have experienced a fall in public, it has been because of a poorly designed and not maintained ramp."
5. "The fact that it's hard to keep friends because you have to cancel last minute so often. It's not that I don't want to go. I so want to go! But, my body said no. Only the best of friends stick around after years of this."
6. "My dad is blind. Lots of home appliances have been going from physical knobs and buttons with clear distinct functions to touch screen panels, some without even any type of sound or tactile cue to let the person know."
"Touch screens also absolutely suck for those of us with hand tremors and proprioception (position sense) issues. If you miss a physical button, it's no problem; just slide your finger to where it needs to be and push. If you miss on a touch screen, fuck you you're going to wherever that touch sends you."
7. "There's a lot of food I can't eat. People get SO, MORTALLY UPSET when I have to decline food. They take it SO personally and it's, like, dude, I just don't want to shit blood and feel awful for the next week. It's not about you. You realize how much food is integrated into socialization when you suddenly can't eat a lot of food. Lunches at work, dates, events, etc. People look at you like you're a freak if you don't join in on the food and it fucking sucks, man."
8. "The pressure to do more than you physically can. All of my disabilities are invisible (Gastroparesis and epilepsy) and it feels like too many adults in my life don't understand that I can't do as much as they think I can. For example, both of my parents love telling me to 'do as much as I can for myself,' but fail to see that I already do. I have a hard time standing for long periods of time due to severe stomach pain, so I have a caregiver that makes me food and cleans (I'm so incredibly grateful). It feels like they expect me to do as much as I physically can in a day, but don't understand what they are actually asking of me."
"If a normal healthy person gets sick for a few days they can usually get themselves food and water and might have to push through the pain to be able to survive. But I'm constantly sick. If I tried to do that kind of stuff, I would be miserable all of the time, instead of having some energy to sit up or be able to talk to people or go outside sometimes.
I just hate that it feels like I'm treated like I'm 'giving in' to the pain or not trying hard enough. I just don't think they understand what that would mean for me or that 'trying hard enough' won't fix my condition or make me feel better in any way.'
"You can't just 'fight your way through' the fatigue. It's like the car is OUT OF GAS. A pep talk isn't fuel, it's just annoying. I work too, and my medication has helped so much, but I still struggle big time with laundry, cooking, cleaning, feeding the cat, etc."
9. "The number of random people who will grab or lean on my wheelchair without permission (when I’m in it) would shock you."
"I've seen people in public just push someone in a wheelchair out of their way without asking, as if they were moving an inanimate object."
10. "I am disabled and a part-time forearm crutch user. I have been accused of doing this to get attention because I'm young and I don't 'look' disabled."
"Back when I was younger and had a wheelchair, I had someone try and flip me out of it because they insisted I couldn't actually be disabled due to my young age. I was in my early teens back then."
11. "The norm of putting big menus way up way behind cash registers. I have vision problems, and I've always wondered if it gave people with normal sight problems."
12. "The social aspect. So many people get mad, like I’m not disabled enough to be using whatever help I need. But it takes me so much longer to recover from overexertion. It makes me want to deposit people in the middle of the Pacific Ocean. Just because they technically could tread water for three days doesn’t mean they should have to or that they would be in any condition to go to work the next day."
13. "Getting unsolicited advice from people who don't know anything about my body. I literally spend all of my time working on managing my illness, I don't need you telling me to see your magic crystal infrared naturopath because a) it won't work, b) I don't have the energy anyway, and c) I'm spending all my time, money, and energy on pursuing scientific interventions. I realize people think they're helping, but the best help is listening."
14. "Even with the ADA, there are still places that aren't wheelchair accessible, so you kind of get into the habit of calling ahead and asking or looking online. A depressingly large amount of holiday attractions aren't accessible, for example."
15. "Urinary incontinence and the cost associated with it. Many people with my condition struggle with incontinence, but we don’t talk about it! I’ve had incontinence since I was 12 years old. I was so embarrassed that I didn’t tell anyone for years. I had to buy diapers behind my parent's backs. I also always smelled really bad. The diapers would leak or the pads I used would fall off, so I would just leak urine all the time. It was so embarrassing. I would have to change my pants multiple times a day to not smell."
"Well, I consulted a doctor and there’s nothing they can do for me. I’m 22 now, and have lost almost complete control of my bladder. People don’t understand that leaks are inevitable and happen occasionally. I get absolutely roasted for having them. My friends still make comments to me when I buy diapers and thick urinary pads, despite knowing my condition. People only accept disability until it’s embarrassing.
Not to mention the cost. I'm a broke 22-year-old college student living on my own in LA. 10 diapers from the only brand that won’t leak are $28. Think about how many times you use the bathroom a day… Yeah. That’s just ONE cost of my disability. There are so many more."
16. "How your partner 'must be really great' for staying with you through your health problems. Why? Why must they be great? Because I’m disabled? Apparently I don’t bring anything good to the relationship."
17. "That by default, you feel excluded from society, no matter how nice people are to you. Assuming there are mobility issues, just catching up with friends becomes difficult because there's too much effort for the other person to make to meet you. You cannot be spontaneous with your plans at all."
18. And finally, "There is one way to be able-bodied and 10,000 ways to be disabled. Things that help one disabled person may in fact be a problem for someone else. Lots of people think 'disabled' means in a wheelchair permanently or blind, but there are so many other ways."
Thanks to these kind folks for sharing their experiences and helping us be better friends and supporters. If you feel like there's anything that was missed in this list and you're comfortable sharing, please tell us about it in the comments below.
Note: Submissions have been edited for length and/or clarity.