Chronic

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 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 lazy.Without medical confirmation of their illness, a lot of people feel uncomfortable asking for accommodations or using mobility aids. And without a diagnosis, people can’t access benefits, disabled 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 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 different 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. 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

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 alone. 
  • The wellness industry is gaslighting you.
  • It’s not your fault.
  • You are worthy of compassion.
  • 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
Print Friendly, PDF & Email

Published by Ryan Boren

#ActuallyAutistic parent and retired tech worker. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they

Navigating Stimpunks

Need financial aid to pay for bills or medical equipment? Visit our guide to requesting aid.

 

Need funds for your art, advocacy, or research? Visit our guide to requesting creator grants.

 

Want to volunteer? Visit our guide to volunteering.

 

Need a table of contents and a guide to our information rich website? Visit our map.