So I know one of the first pieces of medical advice given with allergies or histamine triggers is "get rid of the things that set you off"

But that doesn't fully encompass the emotional reality of the loss of identity or joy or expression those things may have brought

#MCAS

Basically the medical advice around "immediately get rid of all allergens" doesn't engage with the lived reality that each of these is a small loss, a pile of tiny griefs for the person you thought you were

I don't know the best way to reconcile this duality of "stop using this allergen immediately" and the very real stages/cycle of grief

Denial is really real. I'm finally accepting that makeup is mostly not a thing for me now, but that took about a year.

I don't even really *like* wearing makeup. I've never been a daily makeup person, or someone who knows how to apply eyeshadow, or who could wear lipstick and eat.

But a part of my brain always said "maybe someday, vintage 40s lipstick" and that's probably never

[food]
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Dairy has been harder, because I *love* dairy. And for a long time my dairy status was "mild lactose intolerance, can do one fun dairy thing per day."

Now it's "even hidden dried dairy husks equals hours of cramping and pain and regret."

[food]
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But a part of me still hopes that maybe I can find the one combination of factors where I can still eat dairy. (Hard cheese? Soft cheese? At a creamery? Under a full moon in a leap year?)

I present to you : bargaining

Grief is hard.

This week I went through my medicine cabinet and took out all the things that I know make me sick and put them in a bag, and put all my rescue meds on an easy to find shelf

It felt not unlike clearing out all the dog supplies after my dog passed

It also feels like society doesn't give disabled people a model, or even permission or space, for this kind of grief over who we thought we were or plans we had or clothes we loved that are inaccessible now.

We're supposed to be "warriors" or "inspiration" or "burdens."

And I feel like sometimes in the very real struggle to show that #DisabledJoy is a thing, that we're not burdens, that our lives are worthwhile and the valuable movements like #MeBeforeAbleism

We don't allow ourselves time for #DisabledGrief and grieving is really normal.

Again: it's not either/or. Disabled people are full human beings allowed to have the range of human emotions, both joy and grief; also exhaustion at ableist questions.

I've learned so much about self acceptance and #DisabledJoy from @Keah_Maria https://twitter.com/Keah_Maria/status/845369295735541760?s=19

This is not my first "new diagnosis" rodeo, and I've stopped feeling like I have to immediately change everything in my life to try to "fix" my symptoms.

It's okay to take a breath, to feel my feelings, to say goodbye to the make-up and associated dreams.

Honestly, the times when I have rushed from "new diagnosis" directly into Try All The Lifestyle Changes is just...too much of a whirlwind to actually tell what is helping

And mostly ends up with my feelings about the diagnosis coming out sideways later

TBH Try All The Lifestyle Changes is also an expression of #DisabledGrief mixed with internalized ableism for me

It's this whole purity bargaining "maybe if I do this exact combination of things, I will be cured of this chronic illness"

It effs with my head, always

And all the "positive thinking" stuff that people recommend is its own kind of internalized ableism trap

Because that just becomes "if I'm good/pure/positive enough, then maybe I will be cured [of this chronic lifelong condition]. Otherwise, it's my fault I'm sick."

Pro tip: one of my antidotes to the positive thinking internalized ableism trap is "Wild Geese" by Mary Oliver

It starts:

You do not have to be good
You do not have to walk on your knees
for a hundred miles through the desert repenting.

http://www.phys.unm.edu/~tw/fas/yits/archive/oliver_wildgeese.html

When I want to get in touch with #DisabledGrief, I read "One Art" by Elizabeth Bishop

Especially this stanza:

Then practice losing farther, losing faster:/
places, and names, and where it was you meant/
to travel. None of these will bring disaster./

https://www.poetryfoundation.org/poems/47536/one-art

My person is newly diagnosed with an allergy to two common ingredients in shoes, and part of the solution may be wearing special barrier socks that are entirely the wrong texture.

And she felt /bad/ and "silly" for crying about socks because surely there are bigger problems.

This is part of the harm that Oppression Olympics and this internalized bootstrap "someone else has it worse so who am I to complain" ableism does.

We don't allow ourselves space for *very real feelings* about losing a piece of our identities.

As an #ActuallyAutistic person I think I speak with authority when I say that incorrect sock texture is actually not a small problem, it's a grating pebble in your shoe that can distract you literally all day.

Anyway, I was telling my person that I've cried about socks and disability too. Because a big part of my aesthetic used to be fun/weird socks that were ever so carefully mismatched but still had a theme.

And circulatory issues + nerve pain = that's not really a thing.

I cried when I first found socks that didn't make my feet hurt.

Partly from relief.

But also because they were like $15-20 a pair and also came in black and one (1) argyle pattern.

And I didn't get rid of the last of my fun inaccessible socks for like five years.

I cried /again/ when I found out Sockwell makes compression socks that are maybe not as high a compression as is ideal, but are PRETTY and *feel like me*

And they come in more than two colors what magic is this.

https://www.sockwellsocks.com/Women-s-Circulator-Compression-Socks-p/sw1w.htm

I cried about socks *again* when I was telling my person she wasn't silly or entitled for crying about socks that helped but were wrong

Because grief is weird like that, and it never entirely goes away it just doesn't ambush you *as often*

The grief isn't just about socks

It's about grieving for *who you thought you were* and plans you made back when you didn't have all these access needs. It's about grieving for the me that was full of energy and couldn't imagine not reading books because I could and did devour them easily.

For me, I try to do something something blah find balance:

I acknowledge the #DisabledGrief is there. I honor it. I try not to get stuck there, but I also don't try to force myself to feel #DisabledJoy when I'm clearly not ready because that usually backfires.

Medicine is really bad at this

Doctors get maybe 10-15 minutes with the average patient? Maybe 30 minutes if you're really lucky?

Med school doesn't exactly prepare one for the complex lived experience of disability

This is why a community of other disabled people is important

Also, if you're looking for a film that /shows/ disabled joy and grief

May I suggest @unrestfilm

It is specifically about ME/CFS so will not necessarily match everyone's experiences

But as someone with an under-researched condition, it was very relatable

Related thread about ideas I have for braces that are FUN and PRETTY/HANDSOME as well as functional and stabilizing

Being able to use self expression with mobility aids etc is self care

#EDSAwarenessMonth https://twitter.com/UntoNuggan/status/900427894073282560?s=19

PS Allergens are tricky and this is not medical advice, but I have SO MANY things that make my histamines angry that the only way I can emotionally cope with it is by using harm reduction rather than an abstinence/purity model

#MCAS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528824/

Harm reduction theory helps me avoid negative thought spirals if I accidentally a histamine trigger

Or just haven't had the time / energy / motivation to replace it with a better option

Not to mention the financial cost of all this #CripTax

[substance abuse]
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While traditionally harm reduction theory has been used in the context of behaviors like needle exchange programs (vs insisting IV drug users get clean regardless of the risk of acquired infection) or sex Ed

I feel it applies to managing chronic illness, too

Technically, a lot of disabled people already uses harm reduction, we just don't use the fancy public health term for "perfect is the opposite of done" or "if you're in too much pain to do much of anything, see if you can at least drink some water"

#Disability