Chronic illness is a pretty big umbrella, and it would be impossible to list them all. Some of them are triggered by an injury like a car accident, or something in your environment like asbestos, or an acute infection like the epstein-barr virus that can cause mono. Some of them are genetic, and some of them appear to be plain old bad luck.
But they all have something in common, and that’s the chronic part. They’re health conditions that can’t be cured and so they must be managed. Most people describe a baseline level of symptoms that they live with each day, as well as periods with more intense symptoms that are called flares.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis – No End In Sight
The CDC estimates that in 2018, almost 45 million people in the US were living with at least one chronic condition that interfered with their daily life. And according to those estimates, that number has been rising by more than 700,000 people per year on average. So it stands to reason that there are a whole lot of people living with unexplained symptoms right now, just like I was.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis – No End In Sight
I bet you know someone with an undiagnosed chronic illness. Maybe they complain about their health all the time or they always seem to cancel plans. Maybe this has been happening for years and you’ve started to write them off as a hypochondriac, a drama queen. Maybe you believe that if something was seriously wrong, their doctor would have figured it out by now.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis – No End In Sight
Most people I interview
While the autistic individual is interviewing, they will often be acutely self-aware and preoccupied by their own nervousness and internal coaching, and be simultaneously experiencing two conversations at once—one that is shared… More have spent years wondering if their symptoms are all in their heads. And even worse, they often feel like their loved ones believe that too. Like their loved ones are writing them off as weak or lazyLaziness does not exist.People do not choose to fail or disappoint. No one wants to feel incapable, apathetic, or ineffective. If you look at a person’s action (or inaction) and… More.Without medical confirmation of their illness, a lot of people feel uncomfortable asking for accommodationsAccommodation is fundamentally about not changing the person but changing the environment around the person.Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences Yet on a programmatic… More or using mobility aids. And without a diagnosis
Self diagnosis is not just “valid” — it is liberatory. When we define our community ourselves and wrest our right to self-definition back from the systems that painted us as… More, people can’t access benefits, disabledThe label “disabled” means so much to me. It means I have community. It means I have rights. It means I can be proud. It means I can affirm myself… More parking passes, or even patient support groups.
And it turns out that diagnosis isn’t as clear cut as I’d always believed. Not only does it take a long time, but people are often misdiagnosed along the way.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis – No End In Sight
I play trick or treat in the hospital halls Pink and pastel blue, I'm bouncing off the walls I'd like to calculate every swollen bone But I'm strapped inside myself countless hours alone It's blind men, diseased Pills and scripts, they push me Towards, telephones, call anyone with hope Of sculpting life as it was They strip to check my broken neck, I'm doped Do they think it's a trick That I pull when I'm sick But I swear to you, it's true Yes I swear to you, it's true Yes I swear to you, it's true Yes I swear to you, it's true
Swim through the afterbirth, while giant veins offend I'm stretching the skin, till it splits They strip to check my broken neck, I'm doped Desert flower, golden hour, stepping in, pools of blood Put your hand On my chest Hold your breath Broken neck But I swear to you It's true I want some kind of miracle To split, separate The addict If addiction is like misguided love, then compassion is a far better approach than punishment.Can You Get Over an Addiction? - The New York Times In her book Unbroken Brain,... More and the parasite My abstract creates And I know you will appreciate me in any way But the pathosis it strips my bones Just for the holidays --Broken Neck by Screaming Females
The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa.
And when I talk to people with chronic illness, lots and lots of people tell me that they aren’t sure if they’re allowed to call themselves disabled. I’ve interviewed more than 60 people about their experiences with chronic illness and I hear differentOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals… More versions of this same idea over and over again: “I’m not sure if I’m disabled enough. Some days I can exercise and go to work and have a drink with friends without a problem, and some days I physically cannot drag my body out of bed.”
My Disability Is Dynamic – No End In Sight
Lots of people become chronically ill long before they find the disability community
What I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/… More. And so lots of people who become chronically ill don’t feel like they can ask for accommodations if they don’t need them all the time. If I’m not sure if I’ll need a wheelchair next time I’m at the airport, am I allowed to book one in advance? (I am allowed to, but this is a conversation that I find myself having over and over again.)
I am chronically ill and I am disabled. In order to move through the world safely, I need to think about my body’s needs all of the time.
My Disability Is Dynamic – No End In Sight
This is an experiment.
— sick lately, words bad (check 📌 for discord info) (@bennessb) March 9, 2020
I'm hoping the void is a place to talk about weird“Weird Pride Flag” by Ferrous and Autistamatic Be proud of what you are.We’re weird, and we’re glad we are.Weird Pride Promo 2021 Autistic Pride is inconceivable without weird pride, and… More body quirks, the diagnostic experience & life with chronic illness.
You can ask "has anybody ever felt this way?" or "what would you do in my place?" or just primal scream if you need to.#NEISvoid
Let me tell you right now that one of the most powerful things you can do for a patient who might be chronically ill is to believe them, even if you don’t know how to help them.
And actually, that applies to all of you. The most powerful thing you can do for anybody in your life who’s navigating an ongoing health issue is to believe them.
Believe that they’re trying as hard as they can to get to the root of the problem, instead of imagining that you’d know what to do in their situation.
Believe that they’re using all available resources to build a better life, instead of bombarding them with advice about how to get healthy.
Believe that they’ve learned their body’s limits through exhausting trial and error, instead of encouraging them to just push a little harder.
And more than anything else, believe them when they tell you how they feel, instead of looking for a silver lining in their pain or their grief.
Whatever they’re going through, believe them. It’s enough.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis – No End In Sight
Dear Problem Patients
- We believe you.
- You’re not aloneAloneness is a characteristic that many creatives embrace and yearn for. Being alone is anything but lonely. Reading, writing, and creating art all demand a personal space where one can… More.
- The wellness industry is gaslighting you.
- It’s not your fault.
- You are worthy of compassionCompassion Isn’t CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a… More.
- Medical bias is real.
- The way we see medicine practiced on television is a fantasy.
- We believe that you have a problem.
- We are angry and grieving too.
- Talking to other people who know what this feels like has changed everything for us.
- It’s okay to feel joy when your body is hurting.
- Feeling joy doesn’t undermine how much you are struggling.
- It’s okay if you haven’t found any joy in your struggle at all.
- Your story doesn’t need a neat and tidy ending.
- Somebody out there is yearning for a story just like yours that is honest about pain or maybe joy and that ends in an uncertain and messy place.
- Your story matters.
- We want to know your story.
- We want to help you find the stories you’ve been yearning for.
Bodies ride the waves Somebody's gonna have to pay Bodies, living on the shore in their sandcastles Bodies, sea is getting rough and the walls rattle Bodies, come with the tide Nowhere left to hide Bodies Bodies A thousand thoughts ride the waves Can't save nobody, I'm too late Bodies, no one cares about the coming last battle Bodies, wavеs crashing down and the ocean swallows Bodies Whеre you gonna hide the bodies? Bodies Hey-oh-hey-oh
On the shore living in sandcastles No one cares about the coming last battle Sea is getting rough and the walls rattle Waves crashing down and the ocean swallows Bodies Bodies --Bodies by Rabbit Junk
