This is for people with Invisible Illnesses, or the people who care about those struggling with them.
This is for people with Invisible Illnesses, or the people who care about those struggling with them.
Some invisible diseases include: Lupus, Fibromyalgia, Rheumatoid Arthritis, Chronic Fatigue Syndrome + several more.
I encourage use of this subreddit to tell your story, and of your diagnosis, struggles with doctors and health care, and how having an invisible illness has effected your life.
Related Links & Subreddits
/r/Invisible
I'm hoping to create a website primarily designed for people with invisible illness to share with their support networks.
In my experience, when you need help, the burden is put on you to express your needs when you may not have the brain capacity to express that. This website would a) express to those that care the importance of offering concrete options and b) give a diverse array of ideas of ways to help. Eventually I'd like to also offer a personalized section where one can compile what would be most helpful when they are up to it so it is ready to share when they need the help. The largest (and longest term) goal would be a platform to request help / fulfill needs. (Kind of like Freecycle but for services.)
There would also be tabs of misinformation in the media, what's not helpful to do/say and better alternatives, invisible illness simulators, etc.
This is a huge project but also something I'm very passionate about. That's what brings me here. I could use the following help:
This is something that I've been thinking about, researching, dreaming about for awhile now. I have reached out to some individuals but have not had success in finding a collaborator so now I'm casting a wider net... Thanks for your consideration.
I'm so confused right now. And always, I must say. I don't know where to start.
I'm being SO anxious since my ex broke up with me in November. I've always been a sensitive, nervous person, but right now, I been dealing with anxiety almost every day. Everything affects me, everything hurts me. I can't control my emotions. I suffer almost all the time. I was going to start going to a therapist (again), but then all the Coronavirus situation began.
I feel like I'm tired of myself. I fed up with myself. I'm tired of being this anxious little girl, who is always on the verge of crying. I'm tired of being so f *** ing weak.
Plus, thanks to all this emotional tornado, I have a rosacea attack that ruined my skin, so even when I'm doing a treatment, I look hideous, which is not helping my self-esteem. So, ironically, I have been trying to suppress my suffer, and not cry because of this worse my condition.
Yes, suppressing is the only exit that works for me right now. Because I feel I can't even talk with my friends or family right now. I know they love me, and try to help, and they hear and comfort me ... But not always. Sometimes, like today, I feel ignored. I told to my friends this morning that I was feeling very fragile, and sometimes I can't breathe correctly, but the four of them read the message without answer it, and hours later started to talk AGAIN about how one of them is always chased by guys. I guess I'm annoying, and I get it; depressed people are often very tiresome to the other people.
I guess I have to understand, that I only really have myself. I can't count on the others. I cant 'required them to be there for me ALWAYS, because, I'm never ok. And if I want them in my life, I have to silence myself a little bit. I don't want to be a charge for everyone, I don't want to drag them to this hell. So I'm on my own.
This is nearly patehtic; but I will say it: I have a caring personality. I like to feel and give love. I'am very sensitive.
But I have some problems. First one: I usually don't feel a connection with people. There is not much people with I feel truly confortable. I am kind of akward and some social situations makes me feel very nervous. Second one: However, sometimes I know someone that I like. I'am talking about friends, not romantic relationships. And that people often seems to enjoy my company (At least I think so, I mean, they talk to me, they laugh with me and tell me things).
And the proccess I will describe here happened my whole adult life: We start to hang out, we have good times... But always because I do the first step. And then, I get tired, and wait to the other person to take the initiative. And it usually doesn't happen. And they dissappear from my life. And I miss them, but I guess I can't force them to be with me, and I don't like to always be the one who is trying.
Don't get me wrong, I know that making friends in adulthood is not easy. And, please, is not like I am super clingy and needy. In fact, I really appreciate my own privacy and time alone.
I just wish that those few people that I like , wouldn't just dissapear from my life. That's the reason why I often can look cold and I don't express love very much. Is because, since I see other people don't care, I prefer to protect my feelings and act as if I don't care either. I did not take this attitude consciously, it just happened, and only now I realize it.
Should I open to people more? It's scare me so much...
P.S.: Last year I actually make a really good friend, who wants to see me and share time with me as much as I do. But funny thing: She will move to another continent the next month.
If you convert that number into dollars, it is around U$80, but in my currency it's a lot of money.
There are so many cool things I could do with that money every month. I could save up for a trip, buy cool games and such. Save up for really nice things. Instead, I need these pills otherwise my brain doesn't work and my whole body hurts.
I just needed to rant about this, I feel like shit.
We were supposed to get married Feb 26 in India. I am American and my fiance is from India, where his family still lives. I'm having complications from a surgery I had in December for an anal abscess and I had to accept today that I won't be able to travel because the pain is too much. I can't sit or walk and there's no way I can do an international flight. I'm heartbroken and hate everything about this. Please leave some encouragement for me.
My parents never acknowledged my disabilities growing up. In fact, most weren't diagnosed until I was an adult. (Fibro and hypermobile joint disorder just last week.) I was a "baby about pain." (I have fibromyalgia.) I was "wearing braces for attention." (I have hypermobility joint disorder.) I was "being lazy" (I have asthma and maybe PoTS, diagnosis pending but likely, which limits what I can do.) I was being "overdramatic" (I have depression and anxiety.) The only thing my parents ever took seriously was my migraines, which my mother also has.
This meant I was never allowed to be sick. In some ways, this has made me much more of a functional person than I would have been, because I had to function to avoid verbal abuse. But I would actively make my illnesses worse by trying to tough it out, long after I put my parents behind me.
I wouldn't wear braces despite the fact that it obviously helped me not reinjure my joints constantly because of my father getting irritated with them and telling me they would just make things worse in the long run. I should learn to live without them.
I feel guilty when I take a Xanax, or look at my pile of meds, because "who is going to want someone on antidepressants?" (My work and my fiancee are handling them just fine.)
If I take a nap I feel bad because normal people don't have to sleep that much.
But sometimes, I need to take a Xanax to get rid of the panic attack. (And knock down the paranoia I'll get poisoned or run out of my work.) I need to take a nap to sleep off a migraine or recharge before I do chores. I need to take painkillers and meds to function, and I need braces and wraps after an injury so it doesn't cascade into other injuries.
I'm allowed to be human, and not measure myself against what the "normal person" can do. I'm a well-respected professional doing good work, for as long as I can do so healthily.
I see this a lot. Not only people wishing each other a healthy new year, but I also, for example, hear people say when someone is pregnant "i don't care if it's a boy or a girl, I'm just happy when it's healthy". I of course agree that it doesn't matter of a baby is a boy or a girl, but I think is problematic that our society thinks health is so important. I know that people who say this or whishing this mean very well, but it's still very problematic. Inderectly, they say that if someone is not healthy, it's not okay. You can't be happy when you're unhealthy and being sick is wrong. I also think this message is send into the world and when people do get sick, if it's invisible or not, this is something that they have in the back of their mind. If this is what everybody says, how can they ever accept their illness and be happy again?
Don't get me wrong, of course I prefer health over illness, but I don't think health is a requirement for happiness.