u/Ill-Example3728

One thing I’ve noticed is that the chronically ill and disabled community deals with being told we’re “faking” our illness or disability all the time. I’ve had people say things like “you’re self‑diagnosing yourself,” “fibro isn’t a real diagnosis,” or “it’s all in your head.” It hurts not to be believed by the people who are closest to you. It can take people years to actually get a diagnosis, and I’m lucky enough to have doctors who want to work with me — but not everyone has that. Even without a diagnosis, that doesn’t mean our pain isn’t real or that it isn’t affecting our day‑to‑day life. People will never fully understand unless they go through it, but I wouldn’t wish this on my worst enemy. I just want to know if anyone else has gone through this.

One thing I’ve noticed is that the chronically ill and disabled community deals with being told we’re “faking” our illness or disability all the time. I’ve had people say things like “you’re self‑diagnosing yourself,” “fibro isn’t a real diagnosis,” or “it’s all in your head.” It hurts not to be believed by the people who are closest to you. It can take people years to actually get a diagnosis, and I’m lucky enough to have doctors who want to work with me — but not everyone has that. Even without a diagnosis, that doesn’t mean our pain isn’t real or that it isn’t affecting our day‑to‑day life. People will never fully understand unless they go through it, but I wouldn’t wish this on my worst enemy. I just want to know if anyone else has gone through this.

So a little context: I (17F) have a chronic illness. The thing about chronic illness is that it takes over your whole life. You can’t do basic tasks like chores or even hygiene sometimes, and everyone experiences it differently — this is just my experience.

Over the past year, my illness has been getting worse. I can’t do much without my symptoms flaring up. I deal with a lot of chronic pain, and I also can’t regulate my temperature well, so I get hot and cold really easily.

My parents have not been great caregivers. They’ll acknowledge that I’m in pain, but then still make me do heavy lifting, chores, etc. This past week I’ve been flaring up constantly because it’s summer, it’s hot, and since I’m not in school they’ve been making me do a lot more physical work.

Today my dad wanted to organize the garage. Both my brothers were home and could’ve easily done it themselves, but my parents tend to “forget” I’m sick. If I push myself, it can have really bad consequences for my body.

My dad forced me to help anyway. As soon as I got outside, I immediately started sweating and overheating, so I went to turn on the fan we keep out there. My dad asked, “What are you doing?” and I said, “Turning on the fan.” He looked at me and said, “You just got out here, why do you need the fan?” I ignored him because even if I explained, he’d just make me feel bad for something I can’t control.

I can’t stand for longer than five minutes, and the time changes depending on the environment. Because it was hot and humid, I immediately started flaring up. My knee got stiff and weak, so I sat down. My dad kept telling me to get up and work, and said that on Thursday (the day my brother moves into his apartment) I’d have to work even if I’m in pain. It’s like he doesn’t care that I’m disabled.

I was basically forced to “help,” but I physically couldn’t do much. I walked off to sit down again, and my dad called me back. While I was walking toward him, he said, “If you keep acting like this, you’ll be staying with your sister in that same room until you move out.”

For context: he told me I might be able to move into my brother’s room once he moves out, but lately he’s been using that as leverage to make me do whatever he wants. He knows I want my own room, so he threatens to take away something I don’t even have yet.

After that, he asked if I studied for the ACT. I haven’t, because this whole week I’ve been doing so much physically demanding work that my body is stressed out. Studying was the last thing on my mind. He got upset and looked like he was about to throw the container he was holding, but didn’t. For the rest of the cleaning, he kept making comments, and I ignored him because I was in the middle of a flare.

Now I’m wondering: am I the asshole for not being able to help with something I physically cannot do?

Hey guys, it’s me again. So basically, over the last few months I’ve noticed that my parents haven’t really been very considerate of my illness. They’ll do things without caring about the fact that I’m actually sick.

For example, I started having a sensitivity to smells. My mom would light these essences or candles that didn’t smell the best, and I would get really nauseous. I would tell her, “Hey, I can’t handle the smell, can you stop lighting the essence at least when I’m home?” But she would complain and say, “This is my house,” and that she can do whatever she wants. That’s when I started realizing they didn’t really care how it affected me. If it wasn’t affecting them, they weren’t going to change anything.

Another thing: I was finally able to convince my mom—after months of begging—to get me a cane, but she was very disappointed and didn’t really understand why I needed one, even though I had shown time and time again that I did.

A recent incident happened with studying for the ACT. I’m supposed to take it this summer, and with fibromyalgia I experience brain fog. I can’t concentrate for long periods of time. It’s very hard for me to focus on studying for the amount of time they want me to. Honestly, all I can really do is about one hour a day, because that’s how long I can stay focused. If I keep doing the work when I’m not focused, I’m not going to remember anything, so there’s no point.

Some days I can study for more than an hour, and some days I can only manage a few minutes. It depends on the day, the time, and even the weather. When I try to explain this to my parents, they get upset and angry.

Living with fibromyalgia means I’m surviving, not thriving. It’s really hard for me to live a “normal” life. There have been so many times when I probably needed to go to the hospital but didn’t, because my parents chose going to church or some event my dad was hosting instead. He even makes me leave my cane in the car so I won’t “embarrass” him. But at the end of the day, I’m the one who deals with the consequences. They don’t understand that I need the cane, I need medical attention, I need rest.

Rest isn’t seen as a priority in my house. If I take a nap during the day, my parents get upset and ask why I’m sleeping. I might take a nap once a week, but if I do it two days in a row, it becomes an issue. They start complaining that I need to be productive and do work around the house, but I just can’t. It’s getting harder and harder.

It’s really scary to feel your health decline. To feel your mobility slipping away. To feel like you’re losing yourself every day. And the last thing I want is someone getting on me about my education when I’m barely able to get through the day.

I’ll go first. The most upsetting thing someone has said to me was that I was a “lazy bum” because I was putting my health first instead of studying for the ACT. Mind you, this came from a family member who has seen firsthand how much it affects me, so it made me mad and really upset

My parents, especially my dad, keep forcing me not to use my cane during outings. Saturday, we went to my brother’s graduation, and there were stairs, hills, and long waiting times—I wouldn’t have been able to do all that without my cane. My dad forced me to leave it behind and then said, 'Oh, you can just lean on me.' I told him that was the whole point of the cane—so I have something to lean on while having full control over what I’m doing. When I lean on him, I have to match his pace whether he's walking fast or slow. It felt like he was embarrassed of me. He always finds a reason to downplay my illness and make it sound like it’s not serious, but it is. It’s so tiring constantly trying to explain why I need it.

My parents, especially my dad, keep forcing me not to use my cane during outings. Yesterday, we went to my brother’s graduation, and there were stairs, hills, and long waiting times—I wouldn’t have been able to do all that without my cane. My dad forced me to leave it behind and then said, 'Oh, you can just lean on me.' I told him that was the whole point of the cane—so I have something to lean on while having full control over what I’m doing. When I lean on him, I have to match his pace whether he's walking fast or slow. It felt like he was embarrassed of me. He always finds a reason to downplay my illness and make it sound like it’s not serious, but it is. It’s so tiring constantly trying to explain why I need it.

I’m chronically ill and deal with constant pain, migraines, and hand/wrist issues. I also think I’m depressed, and my energy is extremely limited. Over the years I’ve noticed my parents see my illness as more of an inconvenience, and when I try to explain that I can’t do everything they ask in one day, they get angry. I end up pushing myself and paying for it later.

I’ve been struggling with undiagnosed depression for about a year, and I feel unmotivated and overwhelmed. My dad is making me take the ACT and wants me to study multiple times a day. Today was the first day of “ACT bootcamp,” and after 30 minutes my body crashed. He’s still upset about my SAT score (960), and he expects me to study constantly while also doing chores. Rest isn’t seen as a priority, and they get upset when I lie down to recharge. I don’t know what to do.