“You are your best advocate.”

I have heard this phrase many times in my life. Variations of the phrase.

“You are your best advocate.”

“The answer is always no until you ask.”

“Ask for what you need.”

During my struggle for a diagnosis I truly learned how to live by these adages. Prior to my neck injury in 2016 I didn’t feel the desperation to keep pushing for answers. I would go to the doctor, the doctor would tell me something, I would either accept it as truth, or figure out it was a misdiagnosis, and then I would move on.

It wasn’t until this severe pain in my neck continued to recur that I started pushing hard for answers.

There were many times where I felt like giving up. Resigned to live a life of chronic pain without reason.

I remember one visit to an orthopedic urgent care clinic vividly. It was my second visit to this clinic and my fourth recurrence of sudden onset severe pain in my neck in six months.

Driving was agonizing. I couldn’t turn my head. I was squinting through pain each time I would drive over a small bump or make a turn. When I finally got to the clinic I was barely holding myself together.

By the time the doctor came into the room to see me, I was laying there on the table trying to so hard to focus on his words through my pain and sadness.

He was telling me there was nothing he could do for me. The scans they had already done before had shown nothing, and physically therapy had not helped.

I felt like I was being treated like an addict. Like maybe he thought I was looking for opioids. I was taking in every word he said through tear-flooded eyes that I could barely see through.

What I really wanted was answers. I tried explaining that I did not want pain medicine. I just wanted answers.

He could not give me answers.

When I got home I felt defeated. I was so close to giving up. I would live in chronic pain the rest of my life, for apparently no reason at all. Such is life.

I was crying on the phone with my mom later, explaining how no one thought anything was wrong, and maybe there wasn’t. Maybe it was in my head.

She said, “Katie, if you really think something is not right, don’t give up until you have the answers.”

So there it is. Don’t give up. Get the answers. Be your own advocate.

An orthopedic doctor, a spinal surgeon, three different family practice physicians, two urgent care clinics, and an emergency room missed my dissected artery.

It wasn’t until I figured out I had Vascular Ehlers Danlos Syndrome (vEDS) and saw a geneticist that I got the answer to my neck pain. And even that was a grueling three-month fight, from the time I realized I had vEDS to finally getting someone to send me a saliva kit in the mail.

There were many times I felt like giving up. Many times I felt like I couldn’t take another breath. I couldn’t fight another battle. I was done fighting doctors. I would resign to depression and pain. A new life.

But I didn’t give up.

Sometimes the answer is there, but you have to dig your heels in hard to get it.

I learned how to take a step back and look at the big picture. The bigger issue, vEDS, was the answer I needed to see the smaller one, the dissected artery. And knowing I had a dissected artery was the answer I needed to finally get on a path of pain reduction.

In my case, I had seen so many different kinds of specialists over the course of my life and no one was taking a step back to see the big picture. What was the mystery that connected all of these problems?

Connective tissue. A genetic defect. Something not acquired over time, but there from the beginning. Vascular Ehlers Danlos Syndrome.

In the end, I had to be the one to step up to the plate. I had to take a step back and look at the big picture. And while the fight for diagnosis is over, I can still dissect an artery at any time. I can rupture an organ at any time. I am a bomb.

There are still many stories that need to be told, and many answers that need to be found.

I have great doctors now, but I cannot and will not stop advocating for myself.  If I ever do it could mean the end of my life, and I am not done writing my story.

 

Photo credit to Steve Saxton. Thank you!

4 thoughts on ““You are your best advocate.”

  1. It’s hard to believe that something so deadly can be missed. In our family it was undetected for 3 generations until I had a dissection in the carotid artery. Even then a vEDS diagnosis would have gone unnoticed.

    Like you, I took that step back and looked at the bigger picture and uncovered the truth about what was happening to my family.

    By speaking out and spreading awareness, hopefully in the future this won’t happen to others.

  2. I’m curious about your journey and enjoy your writing skill.

  3. I needed this! I also won the genetic lottery with this sucker and I fully believe I would not be alive (a few times over) today if I hadn’t advocated and tried to connect the dots.

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