Chronic Illness Blog

Scott/M/27. This is where I post about chronic illness/disability. Read DNI before following

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

How to Get On

How to have a great, disabled life.

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[hellyeahsickaf]

I deadass almost got emotional the other day seeing a neuroopthalmologist because he was like:

Him: so what do you actually do for your migraines?

Me, worried he's about to scrutinize me for not doing "enough" and overexplaining: I mean, I'm deathly allergic to NSAIDs so that's not an option. I try staying hydrated I guess. Admittedly I should work on it. Usually it's just wearing an eye mask until it's not so bad. I can take Tylenol, that's about it. I've tried a lot, most things don't help.

Him: and you've had this for two decades. You've never seen a neurologist to treat it? Or anyone?

Me: no.

And he turns his chair and looks at me with a lot of sympathy and like, genuine care rather than pity. He just paused for a few seconds and he's like

"You don't have to live like this forever. This isn't... All there is you know?"

And when I tell you I said 🥺🥺🥺

Because that's not something I've really been told, by anyone. It always feels like, this is the only way I'm allowed to live. Just perpetually awful. Managing. That's all there is. But it meant a lot, even if it doesn't feel true yet.

[hellyeahsickaf]

Idk who needs to hear this but

You are literally allowed to walk out of a doctor's office and never come back. You're allowed to self advocate and say "I don't know why you think that's acceptable to say to a patient". You can say "I'm not going to take this"

Which I know is probably obvious and also, extremely difficult to do on the spot. And if you paid a copay, it's even harder because it feels like a waste of money. I think if you're paying to be treated like shit that's not getting your money's worth.

I'm talking about like, genuine disrespect, neglect, malpractice, or true discomfort. Including but not limited to:

Inappropriate comments or demeanor. Ofc there's the obvious crazy "holy shit a doctor just said that?" Comments but I also mean "Well MAYBE if you lost weight you wouldn't have to be on heart medication 😒" "Kinda funny how everyone claims to have POTS lately..."

Poor bedside manner. "I doubt you're in that much pain all the time" "Sometimes in life you need to suck it up. It's not a scary procedure" "It's just a shot, you're not 4 calm down"

Treating you like an addict for needing/requesting a controlled substance. Not like "hey I'm concerned, do you need addiction resources or are you good?" But interrogating you or denying you something that would improve your quality of life on the basis that they are suspicious of your intentions. Some doctors just don't feel comfortable prescribing some things in general and that's one thing, your gp probably won't give you anxiety meds but if they give you an attitude and act like you're trying to fool them, they're an asshole.

Assuming you're lying about your symptoms/conditions. Not as in, you didn't meet the criteria and didn't get diagnosed (you're allowed to get a second opinion) but "Yeah lately everyone seems to think they have chronic fatigue syndrome" "if you truly had (condition) you'd be doubled over in pain right now" "Do you know how rare that actually is? I've met like, 3 patients with it"

Being way out of their lane. Your rheumatologist should not be saying "Is there an actual reason you're depressed? It doesn't look like you've tried every option"

That "I'm the one with the degree so stop talking and listen" attitude. Iykyk.

Not following protocol or respecting your comfort or needs.

Being clearly ignorant when it comes to the issue you're there for. Things like a therapist that tells you dissociative disorders aren't real, that personality disorders are a reflection of your character, or "yeah I can tell by how you're talking to me right now, you're clearly not autistic"

And if it feels wrong, like really wrong, trust yourself. You're allowed to say "nope we're done here".

[hellyeahsickaf]

I keep being like damn no way vertigo isn't like a normal that happens sometimes. Then I remember that for years before I knew I had POTS I thought that everyone got dizzy when they stood up too fast

Sometimes I'm still in disbelief about that one really.

[hellyeahsickaf]

I keep thinking like, yeah I've had continuous migraine attacks for almost 3 months.

But that's starting when I had really bad fog and the nausea and the pain and olfactory aura and was like "yeah, that's a migraine". Especially because 99% of the time I get olfactory auras in the winter months.

I don't know what it's like not to have fog, I don't remember. But I also have CFS/long covid so it's hard to tell. Nausea is normal for me, I don't have a gallbladder. And vertigo, it just kinda, happens, right? I don't know, I just wake up wrong or something and the room spins. That sharp pain at the base of the spine and temples and behind my eye, that's just where I get my headaches y'know?

And some days my emotions just happen to be more fragile- it's one tear and suddenly you can't stop, you can't regulate back to baseline but I mean I have BPD and ADHD and ASD and DID so of course I struggle with regulation so maybe I should just, sharpen my DBT skills. What did I do all that therapy for?

That brain fog and pressure like cotton balls behind my eyes, that's how it's been for years and it doesn't stop. That's just CFS for you. Although sometimes it just, happens suddenly because the sun was in my eyes or I smelled something strong. Some days it fluctuates by the hour, guess CFS doesn't quite work that way. I've always been this way- I mean not always but for a long time.

I think it's been pretty bad for a long time.

[hellyeahsickaf]

What is the worst part of being disabled in YOUR experience?

lost opportunities/abandoning goals

loss of independence/feeling like a burden

the disability symptoms themselves/comorbidities

public misconceptions/misrepresentation (media, online, etc)

medical ableism/abuse/ignorance

internalized ableism/insecurity or shame due to disability

feeling "behind" in life, trapped, stagnant

medical burden (appointments, bills, tests, lack of answers)

inability to enjoy activities you previously enjoyed

Social ableism or ridicule (family, friends, public)

other/complicated (specify if you'd like)

Voting ended onFeb 1

This can apply to mental disabilities as well if you consider them such. Anything that well, disables you

(I know for many it will be most or all of the above and if you could allow multiple responses i would)

[hellyeahsickaf]

The area where I live is known for warm coastal weather that isn't usually scorching but there's a lot of sunshine. Places to go and things to do. Even just walking along the beach. It was fun while it lasted.

I spent a little time in the sun today. One of the worst butterfly rashes I've had in awhile. Flinched when I saw it.

I don't live there like everyone else here does. I live in my house and sometimes doctors offices. Sometimes on the way to an appointment I get a glimpse of the ocean. I miss it out there, even if it was touristy.

[hellyeahsickaf]

Can anyone else tell when a migraine episode is starting to improve but for a while it feels like, fragile?

Like this feeling that you have to be careful about doing anything or else it'll come back full force. A loud noise, a strong candle, bright or flashing lights you didn't expect, a stressful event, you just know it would fuck it up while it's finally dying down.

Like it's similar to when I know certain foods will irritate my stomach and I have to be cautious even though like, it's not like my stomach hurts or anything I just know when it's gonna get pissed off about dairy or something acidic or gaseous or some shit.

[hellyeahsickaf]

Has your physical disability(s) cost you relationships (friends, family, partners, etc)?

Yes

No

Damaged but not ruined

Voting ended onJan 23

I'm tryna see something

[m-e-isannoying]

Finding words when I have brain fog is like:

I know that I know the word.

I know there is a specific word for this.

I can almost see its shadow, but I can't reach it through the jelly that fills my brain.

[bee-fox]

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

[hellyeahsickaf]

Sunlight burns my eyes and makes my hair fall out and my face turns red. But also when it's not sunny, barometric pressure usually changes and I get sick from that, migraines especially. It's like living on a planet where the habitat won't kill you but it's also not quite suitable for you so you have to stay inside

I feel like I don't live in the same world as everyone else anymore.

[dragonpyre]

“The average number of migraines you should be having is zero”

Maybe for you. I’m special though

[lycanr0t]

comic about chronic fatigue

[shamebats]

Migraine sufferers will be like "it's not like I'm disabled or anything, it's just that if I do any of these normal everyday things other people do all the time, my head explodes. But I'm fine honestly, as long as I avoid doing anything ever and my environment and the weather never changes, then my head explodes a little less"

[hellyeahsickaf]

If you put a service animal vest on your pet because you think they deserve special treatment or because it's convenient, you don't just discredit actual service animals, you can harm or kill someone.

Idgaf how well behaved the animal is, they are not trained to minimize disruptions around them. Even small behaviors like your dog trying to sniff a service dog or making prolonged eye contact can be distracting.

And if a medical alert animal misses a cue, they can't help their handler and the person could die or be severely hurt. If someone is about to have a medical event and needs to take medication/lie down/call emergency services/etc, you are responsible if your pet distracts their service animal.

And no, it's not like a therapy animal and especially not ESAs. Those do not grant entry to public and private spaces. Therapy animals are typically in places like hospitals, courtrooms, etc, but don't perform tasks. ESAs require no training and are for emotional support and can be allowed in pet free rental spaces (like pet free apartments where I live must permit them by law) or dorms in some cases.

You don't deserve convenience more than a disabled person deserves to live safely because you decided that your pet deserves entry as a privilege. Bite me.

[hellyeahsickaf]

Bro something is so wrong with grown ass adults whose first instinct is to dismiss someone's physical/mental struggles - especially kids.

Like:

"you don't know what back pain feels like you're 15"

"Depressed? Yeah that happens to everyone. Try paying bills, then we'll talk"

"What do you even have to be anxious about?"

"Oh let me guess you read about ADHD and now all of a sudden you can't focus?"

"You don't know what a migraine is, you look fine"

"Sorry, doctor. Don't mind them, they just lie and want attention"