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illmarks

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

the figure has the shape of a bright pink coat hanger on their body, the hook on their head, stem on their neck, and shoulder rests across their back and shoulders. From the coat hanger radiates dark green spikes, protruding outward and inward. From there jagged lines like electricity radiate around and through the body. The rest of the body is mostly lighter blue-purple.
#art#bodyHorror#chronicIllness
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biffbiffbiff 🛡️

Happy Saturday Fediverse. I've updated my 🧬Neanderthal Gene checker to check and report on 119 SNPs (also added a few known Denisovan SNPs as well). Works with exported 23&me data and should also work with AncestryDNA exports but I do not have a sample for testing.

🐍 github.com/caveman2025/The-Mod

Full version of my hypothesis can be found at
github.com/caveman2025/The-Mod

#autism#chronicillness#autoimmune
Public
Aphrodite ☑️ :boost_ok:

I have a chronic knot in the left side of my back.

It’s excruciatingly painful.

It actually lead me to find #cancer, or specifically multiple tumours, in my kidney 12y ago.

It’s on par with kidney stone pain.

And apparently, at least according to some #EDS friends, it’s a “load bearing knot” which is helping hold me up.

#ChronicIllness life is weird at times.

Public
Broadwaybabyto

A few years ago I caved and bought a cheap Robo vacuum.

I had resisted for years - scolding myself with gaslighting comments like “your condo is so small - you SHOULD be able to vacuum yourself”

I was so mean to myself that I refused an accommodation tool that would help me

This is a common experience for disabled people. We often struggle to ask for the help we need. We feel bad about requiring assistive devices or items that will make life easier.

We see them as a “frill” because other people have taught us we don’t “deserve” them

I bought the cheapest one I could find and it still sat in a box in my apartment for months before I finally set it up.

It sat in the corner taunting me. Reminding me that I shouldn’t have wasted money, that I’m pathetic for not being able to clean my own floor

This tiny little tool that most people buy without a second thought caused me so much mental anguish.

Why? Internalized ableism.

It was the same thing with a shower chair. I resisted for years because I felt it meant I was “lazy” or “giving up”

Imagine a non disabled person thinking that way? They wouldn’t.

When you’re non disabled you’re taught that you DO deserve all the nice things.

You need help with something? Cool! You earned it!

You want a Robo vacuum to save you time? Go get it you worked hard for it!

It’s capitalism and ableism all rolled into one.

This idea that if you’re economically active and healthy, you are entitled to all the great things.

If you’re not? Sit down and accept whatever scraps the world throws at you and be grateful for them

It’s harmful and it results in people pushing themselves to the point of harm

I passed out in the shower and dislocated my shoulder before finally getting a chair

I face planted while vacuuming and ended up black and blue.

For what? To appease some outdated notion of worth?

I firmly reject our societal conception of worth.

We all have worth. A person shouldn’t have to work or have good health to be considered deserving of help, accommodation or love.

So I set up my Robo vacuum… and something incredible happened

I fell in love with it. He became my best friend. This tiny little device brought me more joy than I ever thought possible.

With the touch of a button my entire floor was cleaned and I didn’t have to exert or risk my health

My mast cells improved because I was able to stay on top of dirt and dust better.

My POTS body appreciated not spending days in a horrible flare after an attempt at vacuuming that didn’t do half as good a job as my Robo pal.

He broke the other day - and I’m not embarassed to admit that I cried.

He served me faithfully for years … and had clearly been tired these last few months.

But when he made his final sad little “meep meep” noise… I shed a tear

I cried for the loss of my little buddy, but also for everything he gave to me.

He represented the beginning of my journey to lean into my disabilities. Start accepting and accommodating my body instead of fighting it.

It was a huge gift. It relieved me of an enormous load I didn’t even know I had been carrying.

Now I have various bathroom safety tools, I’ve baby proofed parts of my home, I have a carer help me with showers and other difficult activities of daily living.

I know now that I’m worth it - and in a weird way my Robo helped teach me that.

We are all worth it - and we need to do whatever we can to remind ourselves (and each other) of that fact every single day /14
The world can be a hateful place with many people looking to tear us down.

Never forget your worth isn’t about what’s in your bank account, how healthy you are or what your job is.

It’s about YOU. Who you are and what you bring to the world

You are loved. Just as you are.

#ableism#disability#disabilityjustice
Public
UnCoveredMyths

Tired.

Had a doctor appointment this morning. Far too early.

My hands hurt, and I can barely type.

What do other people with #EDS recommend for finger tip pain control?

The joint closest to the fingernail is the one that keeps bending both ways. I can no longer type without pain. It is in two to three fingers on each hand.It is almost impossible to use the microwave, or flush the toilet in the normal way.

This has been may major health issue in the last month.

I have been using sticky ace bandages around each of the fingers, and they provide a little support. However, taking them off to wash my hands, go to the bathroom, etc, gets exhausting.

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