chronic illness innit

'96 | ileostomate | A side-blog about crohn's and other chronic illness things.

[thebibliosphere]

Saw a headline in the newspapers earlier that was, “why are so many young women using disability aids?”

And the head-ass response seemed to be, “attention,” because that’s the kind of thing we can expect from British media at this point.

It’s not like the entire world just went through a mass disabling event or anything. It’s not like more and more women are finally getting diagnosed with chronic, lifelong illnesses and dynamic disabilities due to advocacy and raised awareness by the people who were left to suffer before them for decades.

No, no. Young lassies just want “attention.”

Fucking ghouls. A plague on your house and yours specifically. The rest of us have suffered enough.

[myalgicencephalomyelitiscfstom]

This was very popular a few months ago so I thought I would repost it

Thanks to Laura Scheepers who has written out the text:

The white ring, with 'healthy individual' has

nonlimited ability to care for self and others

nonlimited ability to attend events

nonlimited ability to exercise and play sports

nonlimited ability to traven The yellowish ring with 'mild ME/cfs' say:

limited ability to work full time

limited abilty to be active

limited ability to tolerate loud/stimulating environments The orange ring, with 'moderate ME/cfs' says:

limited ability to work (may only tolerate WFH)

limited ability to leave house and attend social events

limited ability to complete errands The dark orange ring with 'moderate-severe ME/cfs'has housebound as subtitle and says:

limited use of shower

limited ability to prepare meals

limited ability to move about household The red ring with 'severe ME/cfs' says:

limited use of restroom

limited use of books and technology The poopbrown ring with 'very severe ME/cfs' has bedbound as subtitle and says:

limited tolerance of sensory input

limited ability to move and communicate. —- I believe the original source is or may be https://www.reddit.com/r/cfs/comments/1j0j5zt/new_mecfs_graphic/

[artist-refs]

Making that clickable: [Source Link]. (OP: Yes, the source is correct.)

My mom had fibromyalgia, which is not the same thing, but the two have some overlapping symptoms, and often someone with CFS also has fibromyalgia. Both are conditions more commonly found in women, and are - shock and surprise! - often dismissed by health care professionals.

Putting this here both for writing reference and for awareness.

[captain-price-returns]

[swoony-spoonie]

When the brain fog kicks in..

[lastoneout]

was half convinced this was on purpose

[undercover-crohnie]

wearing a resistance band around my thighs is such a game changer. i didnt even realize my pelvic floor (?) muscles were needlessly so tense just from sitting and standing. the relief was immediate!

[undercover-crohnie]

thinking about that time when i was in the hospital as a teen and a bunch of judgey psychologists came to evaluate me and one of them (probably a resident) asked me what i was listening to since i had my headphones next to me and then proceeded to say the band i was listening to sucked before leaving

i hope he's either more compassionate now or fucking failed and is doing literally anything else that doesn't involve treating vulnerable people

[dankmemeuniversity]

[iamoutofideas]

[geigercuntter]

Let’s have so many fucking issues and problems together

[undercover-crohnie]

happy disability pride month!!!

shout out to my missing colon and lower small intestine!!!! and my ileostomy stoma named kinoko!!!!

[chungledown-bimothy]

bodies should have crash logs. why the fuck did that just happen.

[autisticadvocacy]

The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families

A rule change pushed by White House officials would slash benefits or end support for as many as 400,000 Supplemental Security Income recipi

The Trump administration wants to make a rule change that would decrease or end benefits for SSI recipients who live with their family. As many as 400,000 disabled people may have their benefits cut if this rule change occurs.

[thatdiabolicalfeminist]

It's worth noting as always that as things currently stand, the MAXIMUM benefit a person can receive from SSI is $994 a month.

If two people on SSI are married, the MAXIMUM they can receive is $1,491 a month, total, for both of them. (Meaning marriage to another SSI recipient reduces your maximum income possible to $745 a person each month.)

Could you live on that?

Could you live on that without living with family?

[daftpatience]

this is what i wanted to make! feel free 2 use this for whatever i love you

[indicatheory]

[undercover-crohnie]

colon's gone :)

[crippled-peeper]

traveling while tired and disabled feels like a simulation of hell

[gayvampyr]

doctors are like “what is your availability like 1 year, 3 weeks, 2 days and 4 hours from now” and you just have to guess

[isbergillustration]

Maybe If I Rip Out All My Internal Organs I Will Feel Better

[pleaseletmeexist]

When I say “school should be disability accessible”, I don’t just mean we need handicap rails and EAs. Kids should be able to miss a day without failing out of school. You shouldn’t be dismissed from clubs because your attendance record is “spotty” (true story). I once missed an entire week of school because of a terrible, unending migraine. I was expected to keep up with my studies despite the blinding pain that came with working on my computer. When I heard my teachers say that you couldn’t miss exams, I asked what I would have to do to be excused from them. Their response? “Either get a doctor’s note an hour before the exam or death of an immediate family member.”

I cannot express how rigid this expectation was. First of all, with my condition, I wouldn’t have enough warning about my sickness to go to the doctor and request a note. For many people, this is exceptionally difficult, especially with the current shortage of medical professionals. Next, it ignores the fact that my schedule may not line with theirs because of my medical needs. Once, I had to visit a hospital a province away (which I was on the waiting list of for over a year) on the same day as an exam. I begged my mother not to take me because I was so nervous that I would be marked as an automatic fail. I was lucky enough to make it work, but that’s only because of my spectacular support system consisting of family members and wonderful doctors.

Disabilities aren’t always about needing a bus that can accommodate wheelchairs. It’s already difficult enough for many of us to maintain school attendance without the harsh punishments involved for skipping a day. We need to be able to miss school without being punished. Only than can you claim that the school is “accessible”