THE LIFE I'M STILL TRYING TO GET BACK TO
Living with hEDS, chronic pain, and the fight to stay connected to my own life
I was born with hEDS, but for most of my life, I managed it. Then an injury in October 2023 changed something—and the baseline I kept expecting to return to never quite did. I kept waiting to get my life back. Instead, pain slowly began taking up more of it. I don’t know how this story ends yet. I only know I’m still here, still trying to find my way back to the life I know is mine.
I am 41 years old.
I was diagnosed with hypermobile Ehlers-Danlos syndrome when I was 32. But I was born with hEDS. The diagnosis did not give me a new condition; it finally gave a name to something that had been there my entire life. And suddenly, so much of my life made sense.
And for a long time, that diagnosis was something I lived with.
It wasn't something I built my entire life around.
I had pain. I had symptoms. I had a body that didn't always cooperate the way other people's seemed to. There were things I had to manage and things I had learned to accept.
But I managed them.
I worked.
I built businesses.
I raised my daughter.
I traveled.
I created.
I went fishing.
I livestreamed.
And somewhere along the way, I built REELFISH - a brand rooted in my love of the water, my dad, and a philosophy that has become increasingly relevant in this chapter of my life: Be Real. Stand Firm. Rise Above.
At the time, I certainly wasn't thinking about those words as a chronic-pain philosophy. But lately, they've taken on a different meaning.
I tackled projects that probably should have required people considerably more qualified than me and usually figured them out anyway.
I have always been the person who sees something that needs to be done and thinks:
Okay. How do we do this?
I don't particularly enjoy being told something can't be done without understanding why.
I like problems.
I like systems.
I like taking something complicated apart, understanding how the pieces affect each other, and putting it back together in a way that works better.
That has followed me everywhere.
Through business.
Through motherhood.
Through creative work.
Through my house.
Through relationships.
Through whatever ridiculous project I've decided I'm capable of figuring out that week.
And for most of my thirties, now finally understanding what had been behind so many things throughout my life, hEDS existed somewhere in that very full life.
Then October 2022 happened.
There Is a Before and an After
In October 2022, I was injured.
I didn't know then that I would eventually start measuring my life against that point.
Before the injury.
After the injury.
Before, hEDS was something I managed.
After, pain increasingly became something I had to organize my life around.
At first, I expected to get better.
That's what you do when you're injured.
You hurt.
You treat it.
You modify what you're doing.
You heal.
You return.
Except I never really returned.
Eventually, doctors figured out that this wasn't one simple injury. I had feathering tears involving the intercostal muscles along the right side of my ribs, along with injuries to my levator scapulae and rotator cuff, and a partial dislocation of my clavicle.
Suddenly there was an explanation for why so much of the right side of my upper body felt like it had stopped functioning as one cooperative unit.
I wanted it fixed.
So over the next several months, I spent roughly $20,000 on PRP treatments trying to give my body the best possible chance to heal.
Platelet-rich plasma was injected back into the injured areas - my clavicle, ribs, shoulder and levator scapulae. Again. And again. And again.
Across roughly three months of treatment, there were at least 18 individual injections.
I did them without pain medication beforehand.
Without pain medication afterward.
Not because anyone gave me a medal for it. And not because I think that's how anyone else should handle PRP.
Because I knew what pain I could handle.
During one treatment, while the doctor was injecting the platelets back into me, I very enthusiastically cussed at him.
Then promptly apologized.
Apparently even my pain tolerance has terms and conditions.
But I went back.
I kept doing the treatments because I believed there was a path back.
That's important context for everything that came later.
When I say pain is stopping me now, I'm not saying I've never learned how to function through pain.
I have spent years doing exactly that.
The problem is that eventually this stopped being only about how much pain I could tolerate.
There were better periods. There were things I could still do. There were treatments, doctors, imaging, medications, attempts to strengthen things, attempts to calm things down, attempts to understand what exactly had changed.
But the baseline I kept expecting to come back never quite did.
And lately, if I'm being truthful, it feels like the opposite has been happening.
It feels harder.
The pain has become more intrusive.
The flares have become harder to work around.
Fatigue takes more.
Things I used to be able to push through now sometimes stop me completely.
And perhaps hardest of all, pain has begun affecting something I have always depended on:
my brain.
I Can Handle Pain. Until I Can't Think Around It.
I've spent years functioning while hurting.
I'm extraordinarily good at compartmentalizing.
I can laugh while I'm hurting.
I can have a conversation while I'm hurting.
I can accomplish something while I'm hurting.
I can look completely fine while I'm hurting.
That creates a strange problem.
People see what I can still do and understandably assume it tells them something about what I should also be able to do.
Capability and capacity are not the same thing.
I may be capable of running a business.
That doesn't mean I currently have the capacity to work an eight-hour day.
I may be capable of speaking to hundreds or thousands of people.
That doesn't mean I currently have the capacity to maintain a conversation for an hour.
I may walk 2.5 miles because movement sometimes helps my body loosen up, then become completely overwhelmed later by something as seemingly insignificant as making a doctor's appointment.
That contradiction can be difficult for other people to understand.
Sometimes it's difficult for me to understand.
But when my pain reaches a certain point, my brain eventually loses the fight to keep it in the background.
Pain moves forward.
Thought gets pushed backward.
Maintaining one continuous idea becomes difficult.
I can start something and lose what I was doing.
I can walk away halfway through getting ready and have to bring myself back to it again.
I can listen to someone and suddenly realize my brain stopped recording somewhere in the middle.
I can know exactly what I need to accomplish and feel completely unable to initiate it.
And when that happens for long enough, there is a particularly cruel psychological consequence:
I start feeling like I'm losing access to myself.
That's the Part I Wasn't Prepared For
Pain hurts.
Obviously.
But I don't think I understood before living this how much chronic pain can take that has absolutely nothing to do with the sensation of pain itself.
It takes time.
Attention.
Patience.
Sleep.
Concentration.
Spontaneity.
Work.
Money.
Relationships.
Confidence.
And sometimes identity.
There are days when I look around and watch everyone else simply live.
They go places.
They work.
They laugh.
They make plans without first calculating what their body might demand in exchange.
And I don't resent them for it.
I want to be with them.
That's the grief.
I want access to my own life.
I want to work.
I want to create.
I want to go fishing.
I want to livestream.
I want to build things.
I want to wake up with an idea and immediately start making it real instead of first negotiating with my body.
I don't want my world to become smaller.
So I keep looking for ways to make it bigger again.
I Am Still Trying
Right now, progress can look ridiculous from the outside.
Every morning I try.
I get my daughter to school.
I walk - not run, not jog. Walk - because I'm trying to get my body moving and loosen what feels locked up.
I shower.
I roll out my back.
I get dressed.
I do my hair.
I do my makeup.
Not because makeup cures chronic pain.
Because I want to be ready for my life if my body gives me access to it that day.
Earlier this week, getting through that entire process took until around 1:30 in the afternoon.
Then I got it closer to 11:30.
My goal is 10:30.
One morning I managed to walk before taking my daughter to school.
I was ridiculously excited.
Then I was too exhausted to repeat it the rest of the week.
So I adjusted.
I walked afterward.
That matters to me.
I'm learning to be proud of progress without turning yesterday's accomplishment into tomorrow's minimum requirement.
I'm learning that trying again does not always mean trying harder.
Sometimes it means trying differently.
And sometimes it means accepting that today isn't going to happen.
I am significantly worse at that last one.
I Need Somewhere to Put All of This
I naturally document things.
It's probably one of the most consistent traits I've carried through every part of my life.
When something isn't working, I want to understand it.
What changed?
When?
What happened before it?
What did I try?
Did it help?
Did it make things worse?
Is there a pattern?
Am I remembering this accurately?
What does the actual evidence say?
So if pain is going to occupy this much space in my life, I've decided it can at least start producing data.
Which brings me to the Fish.
Yes.
Fish.
Somewhere along the way, my ChatGPT use evolved into different specialized projects that I call my School of Fish.
It's ridiculous.
It also works extraordinarily well for the way my brain operates.
And pain is officially getting its own department.
Pain Fish
This is where my daily life lives.
This is where the blog gets the story.
The ugly days.
The victories.
The appointments.
The frustration.
The things I can't explain to someone who hasn't experienced them.
The things I eventually learn how to explain better.
This is where I will take what is happening inside my life and turn it into words.
Tracker Fish
Tracker Fish gets the receipts.
Pain levels.
Symptoms.
Movement.
Functional capacity.
Medications.
Treatments.
Appointments.
Imaging.
Flares.
Patterns.
Changes.
Things that helped.
Things that absolutely did not.
Because memory is imperfect, particularly when you're exhausted and hurting.
I want the record.
And I want the record kept separate enough from the story that neither one has to pretend to be the other.
Pain Fish tells what it felt like.
Tracker Fish documents what happened.
Together, maybe they help me understand something I couldn't see while I was simply trying to survive the individual days.
This Is Not Medical Advice
I need that to be clear from the beginning.
I am not a doctor.
I am not writing this to tell anyone else how to treat hEDS.
My body isn't your body.
My symptoms aren't your symptoms.
My treatments aren't automatically appropriate for somebody else.
I will talk about what happens to me, what my doctors tell me, what I try, what I observe and what questions arise.
But this is one person's experience.
What I can speak about with authority is what it feels like to live inside that experience.
The parts that don't appear on imaging.
The parts that don't fit neatly into a pain scale.
The weird contradictions.
The invisible calculations.
The emotional cost.
The adaptation.
The humor.
The anger.
And the determination to keep finding pieces of yourself when pain makes them harder to reach.
I Don't Want to Become a Chronic-Pain Inspiration Story
Please don't make me inspirational.
I will hate it.
I don't wake up every morning courageously battling adversity while uplifting music plays somewhere in the background.
Sometimes I'm strong.
Sometimes I'm hilarious.
Sometimes I'm angry.
Sometimes I'm incredibly productive.
Sometimes I'm short-tempered and don't particularly like the version of myself pain has dragged out that day.
Sometimes I cry.
Sometimes I lie on the floor because I can't find another position that hurts less.
Sometimes I make jokes while I'm lying there.
Sometimes I spend an unreasonable amount of time taking pictures of my own shoulder because apparently pain does not disable the Investigation Department.
I am not trying to perform chronic illness correctly.
I am trying to live honestly inside it.
Why Put It Somewhere Other People Can Read It?
Because somewhere there is another person who has tried to explain:
Yes, I could do that yesterday. No, that doesn't mean I can do this today.
Someone else has looked fine while hurting terribly.
Someone else has wondered why they can accomplish something complicated but freeze over something seemingly simple.
Someone else has watched their productivity disappear and wondered whether everyone around them thinks they're lazy.
Someone else has felt guilty asking for help.
Someone else has had a medical report say something was "mild" while their actual life felt anything but mild.
Someone else has looked at the person they used to be and wondered:
Where the hell did you go?
And maybe they're still there too.
Maybe they're just harder to reach right now.
So That's Who I Am
I'm Taryn.
I'm 41.
I was born with hEDS and finally diagnosed at 32 - an answer that made so much of my life suddenly make sense.
For years, I managed it.
Then I was injured in October 2023, and something changed.
I've spent the years since trying to get back to a baseline that increasingly feels like it's moving farther away instead of closer.
Right now I'm in one of the hardest periods I've experienced.
I don't know exactly why.
I don't know what the next MRI will show.
I don't know which treatment will help.
I don't know whether six months from now I'll look back at this and realize I was standing immediately before something finally changed for the better.
I hope so.
But I'm not going to manufacture an ending I haven't lived yet.
What I can do is document the middle.
Honestly.
Accurately.
With data when data exists.
With uncertainty when it doesn't.
With humor whenever I can find it.
And with enough stubbornness to keep asking:
What can I still do today?
Pain gets a department.
It gets two Fish.
It gets records.
It gets appointments.
It gets scans and medications and frustration and probably an unreasonable number of spreadsheets.
But it does not get the whole company.
Because underneath all of this, I'm still here.
Some days I'm considerably harder to find.
But I'm still trying to get back to the life I know is mine.
And that's what this is going to be about.
This is where I begin.
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