I know people legitimately think they're helping when they do this but I feel like most people need to learn to keep their mouth shut when they encounter someone with a chronic illness. It's gotten a lot worse in recent years, but it's been an issue my whole life of people saying my rheumatoid arthritis will be cured if I follow some fad diet or buy some scammy product. These days it's essential oils that are supposed to "help" and everyone has some distant relative or friend of a friend who it supposedly worked for. I don't even tell people I have anything wrong with me because most people wouldn't even know otherwise and I don't have to listen to them try to sell me on bullshit or feel pity for me.
this post was submitted on 14 May 2025
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Depression here and I really wish people would stop confusing it with sadness, I'm not fucking sad, I barely feel anything.
Ugh YES. I just feel flat and empty when depression hits.
Reactive hypoglycemia here.
If you see me trembling? TELL ME. I sometimes don't notice it and the result can be an explosive burst of temper as fight-or-flight takes hold and I lash out. (I'm prone to the "fight" side.)
If you see me snacking, shut up with snide comments about weight gain. First, you're probably fatter than me. Second, these little snacks are how I keep my blood sugar from cratering and reacting to your snide comments with a knife. (Metaphorical or literal: your choice.)
I've been living with reactive hypoglycemia for decades knowingly, and with a further two decades unknowingly. Trust me. I know waaaaaaaaaaaaaaaay more about this than you.
Weight gain should never be mentioned at all, it's unbelievable that people think it's ok to do that
I know people think they are being really helpful when they make suggestions, but I wish they would take a step back and ask first.
I have lived with chronic fatigue for 18 years, and pain longer than that. My hair loss started over 20 years ago, and I can't conceive of what it's like to not wake several times a night, or to feel refreshed in the morning. Whatever they're going to say, I've likely tried it, or researched it, or it's obvious pseudo science that doesn't merit research.
It would be one thing if people had knowledge or expertise, but every time it's something they've seen on Facebook, or something they think helped them with a very minor short-term issue.
Sometimes I'm more forgiving because people don't know my story, but when they know this has been almost my entire adult life, and they tell me to buy a supplement or look into grounding mats (seriously), it really annoys me.
This isn't about health professionals looking at my case and running tests or trying new treatments. It's the people who see me at breaking point and ask if I've tried a pillow spray.
Preach it, sister!
I don't have your problem, but a problem of my own (detailed in my own thread). And the sheer volume of idiotic advice I get from people on it is amazing to me.
Yes, please tell me about this cure to a problem I've had literally all my life and have known about and had to manage for about 30 years.
Yep I sure do look normal! Would be nice if I had more energy than negative five. Oh? You have energy waking up so I'm lying about how sleep doesn't refresh? Thanks! Yeah my doctor knows and is baffled but my insurance only covers so many tests! Guess I'm just exhausted until I die! Oh I'm still doing stuff? I HAVE TO TO EXIST.
Yep. There is an expectation from others that you have to constantly "perform" disability in order for it to be valid.
I can't just not do things; they need doing. Sometimes those things are incredibly active, but I know I'll pay for those later with a migraine or something else incapacitating. People don't see that, or the calculations I have to make, they just see the active part.
Also, no amount of rest leads to recovery or feeling replenished, so it doesn't make sense to me to neglect activity just to lie there in pain anyway.
Oh I feel you. Until I was diagnosed with sleep apnoea and put on Cpap my life was a hellscape of brain fog and exhaustion.
As far as we can tell, not enough sleep apnea to qualify for a machine (well, insurance won't)
So I get to clean a cpap every morning for my husband but not use one! Ah well.
It's not cheap, like $1,000 plus periodic supplies but you can buy your own cpap. What I don't know is how you can get it calibrated to your needs without seeing a sleep specialist.
Broke as fuck so that's a no go. We can only do it if the insurance agrees. They agreed with husband because he was very very bad. I'm within normal human operating standards though so no go.
This reminds me I should probably clean my cpap way more than I do...
You're supposed to clean it? 😂
I clean it every morning because it's just easier to do. Hose is one a week, checking filters and everything once a month. I found unscented dish soap and a toothbrush to scrub it all with. Fuck distilled water though, but the hard water is why I scrub every day.
Noted on cleaning frequency, I need to get better about it, esp the mask itself. Why fuck distilled water if you dont mind me asking? I use distilled water from Krogers and its been totally fine.
I pay for water from the city, and by the gods, I'll use it!
More seriously, the distilled water needs to be purchased, brought inside, used, only for a lot to be wasted (since the machine never gets to dry out, he doesn't sleep long enough) and since I am cleaning it every day, it doesn't build up enough to be an issue.
I'm physically disabled with minor mobility issues. If I say I can do it, I can. If I say I can't, I can't. It's that simple.
But can you type? /s
How normal I am, or can seem, or can even out perform you. The nuances of a lack of sleep are the real cause of my disability, and no drugs work to change that after a broken neck and back. There is nothing simple or binary about disability, like how the mind of a child views the subject, regardless of the person's age.
I'm (partially) blind and (partially) deaf. People seem to think you can either see and hear, or you can't. The fact that I often can't hear or see something just seems to annoy people.
I have a friend who is legally blind. He can see. And this makes people act like utter shitheads to him when he uses his white cane.