#visible illness

[redinkpress]

summer edition of my chronic illness magazine now available!! copies start from just £2

this seasons magazine includes;

- how to stop medical gaslighting

- whats in my chronic illness crash cart

- electrolytes: a breakdown

- insight on me/cfs

and more!!

[doomspaniels]

I just want to remind the world that anyone can have a compromised immune system, without any visible clues. You might not realize, working with them, or casual acqaintance.

Anyone might have a mobility problem, and without always using mobility aids. Some people never use them, some people only need them occasionally. Some people with mobility disorders even have active jobs/lifestyles; we just can't participate on bad days.

There are thousands of reasons someone might have an immune system operating at less than 100%, and plenty are not obvious. Anyone you know might have well-controlled diabetes so they never mention it, or cover up asthma/COPD with "it's just allergies." A person could have a transplanted organ (or have donated a kidney or bone marrow!) that doesn't give them any noticeable problems when you see them.

Visible and invisible disabilities are everywhere. Please remember that we're all in danger right now, and please help us stay alive.

[littleziisa]

Made a lil rant about all the good-willed "If you hadn’t told me I wouldn’t have noticed your paralysis" comments. Because I’m silent af there are finnish and english subtitles. English is my 2nd language so the spontaneuous grammar sucks but whatever.

[hobohumanitarian6]

Look y'all every single disability invisible or not is invisible unless people actually open their eyes and acknowledge your a real freaking person with a worn-down body.

[mightyoctopus]

People with visible illnesses often don’t want to talk about them, especially if they are obvious. People pay attention to them. Others see the illness first and the person second. 

People with invisible illnesses often do want to talk about them. (If it’s a respectful conversation.) Their illness may affect their lives a lot, yet many people don’t acknowledge them or even refuse to acknowledge and accommodate them. For these people, a conversation about their invisible illness might be the validation they always sought.

But then again, maybe it isn’t. Everyone is an individual and though these observations apply to some people will in/visible illnesses, they obviously do not apply to all. Just something I’ve been thinking about.

[autisticartemio]

A question for others

I feel so terrible about something. I have been trying to learn why I feel so exhausted and achy all the time so I’ve been searching up different illnesses to see if I’m able to find an answer when something I read hit me a little badly.

As an autistic, like many other autistics can relate to, I have a hard time trying to express sympathy and whatnot, and my usual way of doing so is by saying I have felt something too (i.e someone: I didn’t sleep last night and I feel really sick. Me: oh I was sick a few weeks ago).

This leaves me with what I read. It was someone mentioning that by responding to someone with an illness or disability (both visible and invisible) with an experience is ableist. And to me that makes things a little hard because I can’t tell whether or not this trait is ableist when I do it or not. Basically my point is what are people’s thoughts on those who express sympathy/empathy in this way to others?

(Warning: I have problems making points and making sentences so my responses may not be the most professional)

[bemineunderthestars]

I’m sick of being told my heart disorder, blood disorder, and low immune tolerance disorder aren’t real. I’ve been told my mental health issues aren’t real as well but that’s a different post for a different time. I’ve been told all of this by women, men, so many people and it’s bullshit. I have horror stories about what these disorders do to me and what I have to go through and you dare tell me they’re not real? You dare tell me that things I was born with aren’t real? Would you like to know some of the shit I’ve had to go through with people because of these disorders? You’re getting them anyway because I need to vent.

And yeah you probably say “Well just don’t go into public!” And I do try to stay out of public until my levels are higher but a lot of us are also functioning adults who HAVE to go into public or we’ll lose our jobs, we won’t eat if eating is possible because some people have to stick to liquids, we have errands to run, we have bills to be paid on time and that can sometimes require going to be post office to mail them, we still have to try and live a “normal” life. Next time you see someone with a mask on over their nose and mouth that looks like a surgical mask, rethink your thought of “Oh my god this person is deadly contagious” and remember that they’re probably not the contagious ones, you are even if you think you don’t have any cold or flu or whatever.

I’ve had some people tell me that they don’t believe I have a heart disorder mainly because “I don’t /act/ like I have one.” There’s nothing for me to really act like. It’s an internal “invisible” disorder. The pain and the effects don’t always show on the outside. The only time they show is if I have an attack and someone needs to administer my medicine, which is done by my brother, my husband, my best friend, and even my co worker at my one job learned how to do it just in case anything happened to me at work. Some people have been proven wrong though because they’ve seen me have an attack and seen what it does to me some time after they said they didn’t believe me what I go through. BUT they also dared to say “Don’t have an attack around me it scares me and I don’t wanna see it” as if I can control when these attacks happen.

You think you’re scared by them? I’m terrified whenever I have them. I know when I’m going to have one too because of how they start and eventually they hit head on and I’m paralyzed in a way. I can’t breath, I’m twitching, I’m shaking, I’m making weird noises, I’m aware of my surroundings but I can’t speak or scream or do anything. Some people think I’m having a seizure but I’m not. It’s similar but it’s still different.

I’ve had people bitch at me about my blood disorders because it means I have to take a day off from work every two weeks to sit in a hospital and deal with this bullshit. My boss at one of my jobs is a fucking lifesaver because he could fire me in two seconds for having to miss work like I do but he doesn’t and he understands that I have medical issues. He also knows I can work from my laptop if he needs me too. Some co workers hate it though because I’m not there and they think me not being there fucks up the system. I have a partner (the same one who learned how to administer my heart medicine) whose just as capable and qualified as I am to help these people or do things that I would normally do. Hell he’s done both our jobs while I’m not there.

My boss at my other job CANT STAND that I have to take so many days off because of medical issues. He can’t legally fire me though so he had to deal with it but I hear a lot of shit from him. I hear that I’m lying, I hear that I’m faking it, he’s saw me have an attack and still claimed that I was faking it. I just can’t deal.

Point is, if you’re someone whose pretty much healthy, doesn’t have any life threatening diseases or disorders, barely has to go to the doctor for anything wrong with them, you need to stop before you talk. I’m not saying all healthy people are like this but a lot of you are. You’re so quick to judge someone who says they have something wrong with them. You’re so quick to say “That person isn’t disabled because they don’t look it” or “Why does that person have a handicapped sticker? They don’t look disabled” when there are A LOT of disabled people with “invisible” disabilities who look perfectly healthy on the outside but are going through hell on the inside.

You’re so quick to judge someone in a wheel chair, on crutches, with a cane, someone whose “talking weirdly” as people so put it, someone whose not walking correctly because they may have a bone disorder or cerebral palsy or something else causing them to not be able to walk right, using a scooter, especially younger people who use scooters because you automatically think they’re riding them just to ride them and be lazy, which yes some do that and it’s bullshit because they’re taking scooters from people who need them, but many young people do suffer from disorders that cause them trouble walking and they need to use a scooter in stores you just can’t always see them because they’re “invisible”, among so many other medical disorders and things deemed “not normal” by society.

I’m not really expecting to get much feedback from this post, I just had to rant because I’m sick of healthy people giving me shit for disorders I have and they don’t believe. It’s sad that I have to prove my disorders to people. I’m sure other disabled people have to prove their disorders to people too. I stopped trying to prove them tbh. I shouldn’t have to prove them.

The only people who need proof are doctors and they get that through tests upon tests upon test upon tests. Even then it took me years to find a doctor who would listen to me and do tests on me in my home country. I had to go through it again in America. I’ve had doctors tell me I was over reacting and that I was making things worse out of a simple pain that "would go away in a few days" but never did. I was born with my heart problem and my heart problem shows so that wasn’t anything I had to prove but I had to prove my blood disorder and my bone disorder. I’m not gonna talk about my bone disorder though this post is already to long.

But moral of this post is, don’t judge someone you see having a problem. Don’t judge automatically people in handicapped spots who look “fine”. Don’t judge young people, or anyone, right away whose using a scooter in a store. Don’t judge someone using some form of walking helper like crutches or a cane or the arm crutches (I’m not sure the medical term for those I’m sorry). Don’t judge someone whose not talking “normally”. Don’t judge someone whose not walking the right way. Don’t judge someone whose acting a lot younger than they actually are. Don’t judge someone for being more hyper and yelling and running and using a lot of arm movements. Just don’t judge people who aren’t “acting” how you want them to act because you’re not comfortable with disabled people and are very ignorant about your views of us.

We’re still people and we still deserve to be treated like people no matter if our disorders are invisible or if they’re visible. You just make a lot of our lives worse than they already are and make a lot of us feel bad for what we have.

[awolfinpain]

So 2 questions, have any of the spoonies been put on meloxicanlm 7.5s (anti inflammatory) and if so how did it help your aches and pains? And question 2, have any of you had the procedure done where they burn off the tips of your nerves to help give pain relief? And if so, when did you notice a difference in pain, ant discomfort and how long did it last for you before you had to get it done again?