Grief around ableism: Work or school

ID: A blurred out photo of someone’s hand reaching for a laptop. Yellow blocks with black text read, “Grief and work or school” and text over a white banner reads, “How has chronic illness or disability affected your relationship with work or school?” ⁣
ID: A blurred out photo of someone’s hand reaching for a laptop. Yellow blocks with black text read, “Grief and work or school” and text over a white banner reads, “How has chronic illness or disability affected your relationship with work or school?” ⁣

GRIEF ABOUT ABLEISM: WORK OR SCHOOL. Your chronic illness may not affect everyone’s ability to work, but for those where it does, it can be a major source of grief in a capitalist society where our identities are synonymous with our work- and where accommodations to work or study can require you to get through a gauntlet of dehumanization. ⁣

How has chronic illness or disability affected your relationship with work or school? How do you feel about work now? ⁣

Grief around ableism: Medical ableism

ID: A yellow background with black text. The title text reads, "Grief over medical ableism: When care causes harm." Above that smaller text says, "How has medical ableism affected your access to care?" And below the title text, "Medical ableism is also compounded heavily by intersectionality: by carrying other marginalized identities. In an interaction with a heavily unbalanced power dynamic, any additional factors that shift the patient's power down can have a disproportionate effect."⁣
ID: A yellow background with black text. The title text reads, “Grief over medical ableism: When care causes harm.” Above that smaller text says, “How has medical ableism affected your access to care?” And below the title text, “Medical ableism is also compounded heavily by intersectionality: by carrying other marginalized identities. In an interaction with a heavily unbalanced power dynamic, any additional factors that shift the patient’s power down can have a disproportionate effect.”⁣

GRIEF ABOUT ABLEISM: MEDICAL ABLEISM. Medical ableism can be incredibly frustrating- not only because it seems to contradict the entire concept of providing “care”, but also because it is a major barrier to diagnosis, treatment, and social validity.⁣

Medical ableism is also compounded heavily by intersectionality: by carrying other marginalized identities. In an interaction with a heavily unbalanced power dynamic, any additional factors that shift the patient’s power down can have a disproportionate effect. ⁣

How has medical ableism affected your access to health care? ⁣

Grief around ableism: Life changes

A photo of Peter (a tall, Jew-ish man with glasses and beard) looking horrified at the pile of boxes crammed inside a larger box and stacked on top of a dolly. Yellow blocks underlay black text, “Secondary grief over life changes from chronic illness.” A white banner juts out from the right, reading, “What changes have you had to adjust to?” ⁣
A photo of Peter (a tall, Jew-ish man with glasses and beard) looking horrified at the pile of boxes crammed inside a larger box and stacked on top of a dolly. Yellow blocks underlay black text, “Secondary grief over life changes from chronic illness.” A white banner juts out from the right, reading, “What changes have you had to adjust to?” ⁣

GRIEF ABOUT LIFE CHANGES. Chronic illness that significantly impacts your life is a constant process of adjustment, and that can be exhausting. ⁣

Illness can touch every part of your life: relationships, housing, work, leisure, eating, mobility, coping, sensory capacity, etc. ⁣

What kind of changes have you had to adjust to? How did you manage? ⁣

Sometimes those changes are enormous, like how much you’re able to earn or losing major relationships in your life. These can have cascading effects on everything else that serve as daily reminders of how much things have changed. ⁣

Sometimes those changes are small (I can’t eat instant noodles anymore?!) and those can feel like nothing, except on a day when it really just sticks in your craw and maybe you end up crying while clutching a bowl of mediocre ramen. ⁣

That’s okay! You get to grieve over whatever you feel grief over- even if it’s just a symbol of a greater loss. ⁣

Creating space to feel your grief

A yellow background with black text, the same as the image caption. In the bottom left corner is a line drawing of a person with short hair seated with their knees up and their head in their hands. ⁣
A yellow background with black text, the same as the image caption. In the bottom left corner is a line drawing of a person with short hair seated with their knees up and their head in their hands. ⁣

CREATING SPACE TO FEEL YOUR GRIEF. One note: grief likely feels heavier with the added weight of living in the shadow of a pandemic. Be extra-gentle with yourself during this time. ⁣

Everyone feels grief differently, so my goal in general is to figure out what works for you and create space (schedule it in if you have to!) for you to do that. ⁣

1 – Find coping mechanisms that work for YOU, and practice them when you’re feeling less intensely. That way they’ll come to you more easily when you’re in a difficult emotional space. ⁣

2 – Find ways to connect with others. Connect with people in your life who love you, and tap into new communities. Fight that urge to isolate yourself, and lean on your communities. ⁣

3 – Find a way to gently and safely face your grief, head on. ⁣

4 – Try out different ways to adjust to your new reality. (Easier said than done.) ⁣

When grief makes your chronic illness worse

An image of Kaia sitting with one leg underneath her in her wheelchair on a forest path. Black text over yellow blocks reads, “When grief makes your chronic illness worse”. Kaia is an Asian woman wearing a grey camisole top and a short pink floral skirt, with her hair pulled back. ⁣
An image of Kaia sitting with one leg underneath her in her wheelchair on a forest path. Black text over yellow blocks reads, “When grief makes your chronic illness worse”. Kaia is an Asian woman wearing a grey camisole top and a short pink floral skirt, with her hair pulled back. ⁣

Feeling your feelings uses energy like anything else. Have you ever felt absolutely wrung out after a good cry? Feeling emotions and expressing them is exertion, just like going for a run or writing a report. ⁣

We just don’t value emotions in the same way we value physical and mental “labour”. That means we expect it to have no cost at all, which is just not how that works. ⁣

So let your feelings flow- and maybe schedule in some rest time afterwards. ⁣


4 types of grief you may experience with chronic illness

A yellow image with black text, the same as the image caption. There is a bold black ribbon in the corner of the image, partially cut off. ⁣
⁣
A yellow image with black text, the same as the image caption. There is a bold black ribbon in the corner of the image, partially cut off. ⁣

Based on information from @whatsyourgrief .

1 – Non Death Loss. ⁣
Yes, I’ve gained a lot through my chronic illness. But I’ve lost a lot too, and it’s important to allow yourself time and space to feel how this change has affected your life. ⁣

2 – Non-Finite Loss.⁣
11 years in, I have fewer Disability-Smacks-You-In-The-Face days, as @simplybphotos_yeg puts it. With non-finite loss, we experience the grief of losing the life we imagined we’d live. As @whatsyourgrief makes clear, this grief may go on for a long time. ⁣

3 – Disenfranchised Loss. ⁣
I’ve seen some talk around how grief around #longCOVID is ableist (I completely disagree, see the previous post)- when we encounter that, we may live with disenfranchised grief: the feeling that you are denied the right to grieve. ⁣

4 – Secondary Loss ⁣
Disability can set off a ton of changes. When the initial loss triggers a domino effect of more losses, those are secondary losses. ⁣

Pride call for revolution

A graphic of 3 people march with flags over text reading REVOLUTION. The leader of the march is using a wheelchair, and the last is using a prosthetic leg. A transparent rainbow is visible behind them. ⁣
A graphic of 3 people march with flags over text reading REVOLUTION. The leader of the march is using a wheelchair, and the last is using a prosthetic leg. A transparent rainbow is visible behind them. ⁣

PRIDE CALLS FOR REVOLUTION. Every year, it becomes more clear that we are not free until we’re all free. And we are not all free. ⁣

Grief & chronic illness

A hilariously moody image of Kaia, an Asian woman with rectangular glasses, among willow fronds. Yellow blocks in the top right underline grey text reading, “Grief & chronic illness.” ⁣
A hilariously moody image of Kaia, an Asian woman with rectangular glasses, among willow fronds. Yellow blocks in the top right underline grey text reading, “Grief & chronic illness.” ⁣

The social model of disability has one gaping flaw: it doesn’t account for the embodied experience of illness, for the pain, fatigue, and change. It’s okay to feel grief over these experiences, whether they’re new or not. ⁣

Disability isn’t the abject tragedy it’s made out to be, but it can be hard. Our healthcare systems and our society are designed to hide disabled folks away. We’re just one of many dirty secrets our world tries to ignore.⁣

You are allowed to feel grief, to feel rage, to feel exhausted (yea, I count this as a mood in my Daylio) with chronic illness. ⁣


Welcome 2000 followers! REALITY CHECK on how I run this account while chronically ill

HOW (AND WHY) DO I RUN THE WILLOWS WORK? I’m Kaia, a neurodivergent, queer, sick & disabled Filipina-Canadian. I have a degree in social work and 8 years experience in research. Here at The Willow’s Work we chat about chronic illness, health systems, and how they interact with our social structures! ⁣

I thought for 2000 followers I’d do a quick reality check on how I manage this account. ⁣

  1. I write this account for fun! I tend to write in bursts based on when it feels fun or helpful for me to process my experiences through the lens of biopolitics. I focus on theory and community building because I like those best! ⁣
  2. I only post once a week because scheduling posts is exhausting for me, so I tend to schedule in batches. I ALWAYS back-up my posts to WordPress just in case (link in bio!). ⁣
  3. I take multiple photos whenever I go out, and I’ll use those for literally years. I don’t leave the house often enough to have fresh photos for every post. ⁣
  4. I don’t engage with my account if it feels like a chore. I often get tired from cross-posting on Fridays so I don’t tend to respond to comments or DMs until later.⁣
  5. I LOVE taking, sharing, and receiving #SpoonieVision (videos of nature for when folks can’t get outside) but I loathe actually posting and backing it up- so I post that in stories more often. I should make a highlight…⁣

    If I had more energy, I’d definitely post more often. This is how I keep this account sustainable and fun for me- what would you change to work better for you? ⁣

Have you internalized being accused of hypochondria?

There are a bunch of reasons we might not take our symptoms seriously: prioritizing in genuine scarcity of care, overcompensating with your new normal, not understanding what is normal or abnormal, only hearing about extreme cases, and not wanting your doctor to see you as a hypochondriac. ⁣

Here’s the thing though: chronic illness travels in groups, because body systems affect each other. One diagnosis usually leads to another- and in the absence of a diagnosis, the “issues” can pile up pretty quickly. ⁣

It’s important to be aware of why you might be dismissing your own symptoms, and if your reasons serve you best. ⁣