It took me over a decade to realize I was disabled.

Internalized ableism is no joke. It can lead us to push our bodies and deny our reality.

I was a sickly child my whole life - but we didn’t discover the reasons until I turned 30. It was validating to finally have answers. A name for my conditions, explanations for why I never felt well & why my body couldn’t do what other people could.

Despite my now having validation and multiple diagnoses of chronic illness and disability - I didn’t identify as disabled. I was still working, still supporting myself…
So surely that meant I wasn’t right? I was scared of what it would mean if I said I was disabled.

Would people judge me? Think less of me? Would my non disabled friends distance themselves and would disabled people think I wasn’t “disabled enough”? I recognize now these were questions that were mainly due to my own internalized ableism.

I was worried about these things
because I didn’t understand dynamic disability.

I was also grieving my health. Even though I was sick before the diagnosis - once they had a name and no cure I had to come to terms with the fact that I was never going to get better.

I was likely the most functional I would ever be - and would probably lose function as I aged. That reality hit me like a ton of bricks and it took me a long time to reach a point of acceptance.

An injury followed by a viral infection took my remaining function away from me and left me completely housebound.

It wasn’t until a caring and compassionate doctor explained the concept of dynamic disability that I realized I WAS disabled and that I had been for many years.

This good doctor encouraged me to write about my experiences to help others - and while it took me time to become confident enough to speak out - I’m so glad I did.

The fact that I had so much fear of judgement, so much difficulty accepting reality only served to show me why we need more disability advocates. We need people telling their stories. It helps with acceptance of chronic illness & educates others on dynamic disability

If Covid has taught us anything it’s that a large number of people still see the disabled as “expendable”.

How many times have we heard “Covid is mild unless you have pre-existing conditions”. This has been the party line for the entire pandemic

Many folks don’t realize that it’s rooted in ableism. To say it’s only dangerous for those who are already sick is to say that we don’t matter. That killing or maiming us is acceptable as long as the non disabled can continue to live life as though we’ve gone back to 2019

As a result many disabled and high risk individuals have been isolating for five years. Have been quietly exited from society to protect themselves. We started to re-enter the world when high quality respirators became easily available - but even that is problematic

We get bullied from the “covid is over” crowd. They want us at home. They want us to not exist. Because we are a constant reminder of their own mortality and the fact that they are risking disability every time they get a Covid infection.

But here’s the incredible thing I’ve seen happen in the last few years. The disability community are organizing. They may be isolated at home but they’ve found community online. They’ve galvanized around inspiring leaders with strong voices and are creating a movement.

Not just for Covid caution & Long Covid but for the rights of disabled people across the world. For better access to healthcare, more inclusion and recognition of diversity and minority groups. Hashtags, campaigns and artwork have started taking off. We are getting louder

Activism is more important now than ever before, as we face existential threats due to the changing political landscape.

It’s a powerful moment for intersectionality. All of us who are marginalized can and should be working together to bring about change

It’s a scary time, but I have hope whenever I see people speaking out. Sharing stories. Refusing to go gently.

I’m glad to have finally stepped up and found my voice - and I hope that by sharing my story I play a small role in making the world safer

If you’re disabled or chronically ill (or even if you aren’t sure) and you’re afraid to speak up - please don’t be. Speak up. Reach out. Share your story. There’s an incredible community waiting for you and we will lift you up and help you find your voice.

Activism is important right now, but so is pacing. We must work to save our spoons amidst the torrent of bad news & stress we’re inundated with.

“We are a community. We carry each other through the tough times. Our love and support knows no borders, so when a group of us are hurting we all hurt”

https://www.disabledginger.com/p/spoon-saving-social-media-tips-and

Me at ER for cardiac issues

Dr: “Could you be pregnant?”

Me: “No I had a hysterectomy”

Dr: “You look too young for that? Are you sure?”

Me: “I’m confident”

Dr: “I think you might be confused. Maybe it was your appendix.”

Proceeds to order pregnancy test

I’ve had this interaction more times than I can count

Healthcare workers think I’m “too young” to have had a hysterectomy and automatically assume I’m confusing my womb with another organ.

They ask endless questions, only to end up doing a pregnancy test anyways

Perhaps there are patients who confuse their uterus for their appendix, but I would imagine that’s exceedingly rare

The battle I went through to get my hysterectomy was long and arduous. It involved many physicians lecturing me about how I would never be able to have children

Asking insensitive questions like:

“Don’t you want to be a Mom?”

“You might want biological children, many women do”

“What happens if you meet your dream man and he leaves you for being barren?”

You don’t have to endure this type of insulting and misogynistic third degree to get your appendix or gallbladder removed.

They inform you of the surgical risks, you consent, the end.

There’s simply no plausible way to confuse the removal of a WOMB with an appendix

Despite these obvious facts, I’ve had countless doctors assume I’m wrong. That I couldn’t possibly have lost my uterus and it must have been something less important.

I’ve even had “patient CLAIMS hysterectomy”’written in my chart.

Why someone would lie about something so easy to prove or disprove is beyond me.

The end result is always a delay in care while we argue and then wait for an unnecessary pregnancy test which always comes back negative.

Surely we can do better?

I understand that doctors must have a degree of skepticism, and that the price of missing a pregnancy can be incredibly high.

I’m not opposed to them running a pregnancy test if that’s what they feel they need to do.

I am opposed to the delays and gaslighting

It was traumatic to lose my uterus at a young age. The healthcare workers who inundated me with misogynistic questions & put a hypothetical man before me and my health? They didn’t make it any easier.

I feel that trauma all over again whenever I’m questioned about pregnancy

I wish we could endeavour to either TRUST our patient, or just run the pregnancy test without all the unnecessary and (often) rude comments.

I don’t object to the test, I object to the way I’m treated leading up to the test.

Patients know their body best. We know the difference between a womb and an appendix. We know when we’re being talked down to and mistreated.

It causes trauma. Makes us less likely to trust the provider and far less likely to seek care in the future

Please treat your patients with the dignity they deserve. Don’t judge them on how they look, the chronic illness or disability they have or their gender or sexual orientation. Listen to them. Work with them. Let them be a partner in their care.

We can do better together /end
After the hysterectomy I also had a post op complication that was ignored by the ER three times. I had a life threatening internal bleed, but was sent home without tests because they thought I was “exaggerating”.

We MUST listen to patients. I only survived because my accidental advocate stepped up

https://www.disabledginger.com/p/my-most-dangerous-er-experience-and