Hello, hello!
In a support group I'm in, someone posed the question if anyone remembered the very
last day they felt 100%.
I started to look through my old photos, working backward, thinking I was just looking for
the last few days before I needed a cane to get around, then when I found that photo I
realized: Nope, that's not 100%, I'm wearing sneakers with a dress.
Haha!
That's something that when I was younger I said was a fashion choice I'd never make!
I remember I was in enough pain that I couldn't tolerate heels anymore, and realized how tricky
finding that 100% moment was actually going to be.
I might not even know what 100% feels like.
Technically, I've had Ehlers-Danlos Syndrome my whole life but the symptoms were rather
dormant or just very subtle, easily dismissed.
I had hypermobile knees and ankles which would cause me to fall a lot and I would tire easily.
I was one of the last to come in while running in PE, my face would turn bright red to the
point of alarm from my peers and all of which were dismissed by educators and peers as they
thought my weight was the issue.
When I was little my eyes randomly went cross and I saw double and needed glasses, again,
it wasn't considered a symptom of anything.
When I was 13 my back would hurt so much that I would slam it into the ground just to try
and get some relief, it was my instinct to try and realign myself.
Meanwhile, no one around me knew what EDS was, and it wasn't until I started losing
my ability to walk that I finally found it urgent to investigate.
I looked at photos from my freshman year of college and though my ankles were weak and
walking in heels felt like a trapeze act that ended with my hea-- with my feet in hot water
by the end of the night...
I considered it still manageable.
When I turned 23, it came to a point that it hurt to stand in heels even for a moment and though
we were supposed to wear heels at work, I slowly started trading my heels for flats,
hoping my boss wouldn't mind.
Eventually, I had to open up about my pain issues because my ability to stand at all
was declining.
I felt pinches in my heels constantly, and after a few hours, the pain was so high it
felt like fractures, and I needed to sit.
I went to the clinic about my pain they told me I just needed to put my feet up for a bit
maybe do some stretches.
And that hourly limit became shorter and shorter until I couldn't bare to be up more than
a minute.
I went to see the doctor again, I told him I thought something was wrong, he sent me
to a podiatrist, who ultimately diagnosed me with flat feet and plantar fasciitis.
My options were leg braces and orthotics, he said, but the pain was so much I opted
for surgery to reshape my feet after being told that it was the shape of my feet that
was causing me such pain.
After surgery, I started using a wheelchair because one foot was recovering and the other
was in too much pain to bear all my weight alone.
I was sent home the night of the surgery and woke up to feel EVERYTHING.
I was screaming, I could feel the slices on my foot and in my calve muscle, and I went
into shock eventually.
The fact that painkillers would not work for me was another symptom, but we didn't know that.
The doctor expected me to recover and be up and walking after three months.
The surgery increased the pain levels in my left foot, it was hypersensitive, a breeze
felt like the burn of a candle.
My foot could not even TOUCH the floor until 6 months after the surgery and it hurt very much
to do so and still does.
It was after the three month mark that we, my podiatrist and I, realized that the surgery
did not solve my pain problems, it was something else, and we'd missed it.
And though we thought I'd be walking by then it turned out that I would be needing
a wheelchair as a mobility device long term.
I talked to my primary and he referred me to a neurologist immediately and said...
"Yeah, we have to get you out of the chair!"
Blissfully unaware that my chair was a blessing but the pain I was experiencing was not okay.
It took me months to get an appointment, I was in limbo all the time, just laying in
bed, unmedicated, being in pain, waiting for the day that a doctor might have the answer,
might have help.
The day of my appointment finally came, I told the doctor my story, how much pain I
was in, how it was limiting my ability to walk, his response was…
"Well, what you want ME to do about it?"
That line felt like such a betrayal, I had waited for so long, I was so scared and in
so much pain and I just got treated like a joke, like a spoiled child demanding a new
pony or something.
This is when I start doing more in-depth research and investigation and through the help of
my friends and the internet started really looking into EDS.
I'd done the hard part, I thought, I told my primary I needed a referral to a geneticist.
He refused.
He sent me to a rheumatologist instead.
I went to the rheumatologist, they sent me to get a blood test, I go take the blood test
at another facility on another date, and then on another date I come back to the rheumatologist
and all he says to me is…
"Your blood test came back negative for anything"
I said, "Okay… what do I do then?
Where do I go now?
What do I do?"
And he just shrugged.
At this point my lower back pain is really becoming an issue, I had to lay flat most
of the time because sitting up hurt too much.
My primary sent me to a neurosurgeon, who I again, had to wait months to see, he said,
"I think you have an SI joint disease"
"Whoah!
You ACTUALLY suggested something!
Maybe that's it!
I'll take it!"
He sent me to get, um, X-rays or MRIs of my SI joint at another facility on another date
and he scheduled me for some type of shot in the joint, but it flared up my pain.
I was stuck in bed for 10 days straight, no bathing, no dinner at the table, just flat,
and tortured myself to get to the restroom when I needed to.
I went back to the neurosurgeon and he showed me my results.
This day was the worst.
I let him know how my body did not respond well to the procedure and that this was another
symptom of EDS, he told me I was exaggerating, that what I was saying was impossible.
He continues to show me my results, my joints which should be fused together are actually
far apart, ANOTHER symptom, he is alarmed, he says this is not possible for a person
as young as me unless I was in a physically traumatizing event like a car accident.
Nope, I hadn't been.
He tells me he wants me to get surgery to fuse the joints and I burst into tears.
I start to beg him, "You are not listening to me!
I've already had two procedures so far and they both have caused me more harm than good!
I can't do another procedure until I figure this out!
You're putting me at risk!
I need to get tested for EDS!"
He looks at me unamused and condescends, "Are you trying to tell me that I'm wrong?"
I just cry more because I feel so hopeless and gaslit and there is no hope for any help
or relief.
And I don't know what to do.
Then the funniest thing happened, I'll never forget it.
A woman in a white lab coat comes in and asks why I'm crying.
He throws an arm up in the air, "She thinks she has Ehlers-Danlos Syndrome!"
"Ehlers.. what?
I've never heard of that... "
She looks to me, "How do you spell it?"
I spelled it for her as she looked it up on her phone, she looks at the x-ray of my
SI joint and says to my doctor,
"Um… she could very well have this."
And he just sat there stunned, grumbled like a toddler, and said,
"Fine! I'll send her to a geneticist!"
He wrote the prescription/referral thing for me.
But I was never coming back there, I never came back to any of the doctors who spoke
to me like I was garbage and I don't think anybody should.
I went back to my primary but he wasn't available so I worked with a woman doctor
instead, I told her everything that had happened so far and she was on my side and rooting
for me, wanted to help me get whatever I needed.
It was easy at that point to switch from my old primary to now have her be my primary
doctor and working on my case.
My geneticist was also a woman who empathized with the story I told her and she agreed with
my analysis right away that I more than likely had Ehlers-Danlos Syndrome
and she wanted to do a full chromosome blood test.
Now that took about 5-6 months but I finally got my results and right there in ink, my chromosome
variant COL5A1, classical Ehlers-Danlos Syndrome.
Something I've had my whole life and I finally got to see it in ink at age 26, after almost
three years of self-advocating in medical spaces and being told that I'm too young
or that the pain levels I described were impossible… there it was.
Had I been diagnosed earlier, maybe I would've known that wearing heels as much as I did,
which wasn't that much aside from a few parties and work, would harm me so much before
I turned 30.
Maybe I would've known that pushing my ill-fitting wheelchair so hard when I was already losing
some of my ability in my wrists and shoulders, would quicken the loss of ability there too.
I could've been self-affirmed when I stood on stage and said I had difficulty standing
for a long period of time because of my "crooked knees" and a professor said,
"They look fine to me!"
I would've known that what I thought was "crooked" was hypermobility, that my knees
bent backwards and subluxed on a daily basis.
When my fingers did this and this, I could've known why!
Every time a friend or lover or someone I just met commented on my soft skin, I could've
jokingly said, "It's in my genes!"
Har, har, har, in reference to my diagnosis, what a lost opportunity!
[LAUGHS]
Telling this story is my informal letter to doctors and everyone really, to listen to people
when they say they might be sick; when they say they've heavily researched something
and would like to be tested.
Metaphorically I reached for my diagnosis several times and got my hand smacked away
because I was too big, too brown, too young, and because of the misconception of how rare
EDS is, it's just rarely diagnosed.
There is a problem when people come to doctors for help and they are instead gaslit and told
that they are hypochondriacs or sometimes are misdiagnosed with conversion disorder,
something they wanted to diagnose me with as well.
And to the people who are still sick and undiagnosed, for as long you can, and as hard as you can,
keep standing up for yourself, keep advocating for yourself.
You know your body.
You know when something is wrong, only you how much pain you are in.
Thanks for listening, I'll see you eventually, bye.
[OUTRO MUSIC]
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