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by Lindsey B.
Most of my life has been spent sitting in a doctor’s office waiting for answers. The doctors always told me that I was perfectly normal. Almost so much that they implied that I was a bit of a hypochondriac. Over time I started to believe them and told myself that everyone must hurt as badly as I did, everyone must be as tired as I was, and I was just overreacting.
At the age of 25 I finally received an answer. I was diagnosed with hypermobile Ehlers-Danlos syndrome, and dare I say that I was almost excited about the diagnosis because it meant that I wasn’t crazy like so many had lead me to believe.
Leading up to the diagnosis I grew up with debilitating growing pains and migraines. These were just written off as a part of growing. My shoulders had/have a tenancy to sublux or dislocate when I turn over in my sleep or try to pull or push myself up. I was told that I was just over-exaggerating. My hips had degenerated so badly that I could hardly walk. I was offered a walker at the age of 21 as an alternative to surgery because the surgeons refused to believe I was as bad as I said. By the age of 23, I had two major hip surgeries under my belt and a lengthy apology from the first surgeon who offered me the walker.
It wasn’t until my ribs began dislocating and compressing my lungs so I couldn’t breathe that I received some answers. I struggled with horrible pain in my sternum that kept me awake at night and limited my movement during the day. The movement of my ribs popping in and out was audible for people standing in the general vicinity. The scar tissue from the damage to my ribs had created a lump in my chest.
The doctors were testing me for leukemia and all sorts of rare diseases. I encountered a nurse practitioner during this scary process who instantly acknowledged my baby-soft skin, body covered in bruises, and my medical history of dislocations and hip surgeries, and without hesitation told me I had Ehlers-Danlos syndrome. She directed me on how to move forward with the diagnosis and various physical therapists and physicians to see.
After the official diagnosis, I sunk into a depression. I found myself making excuses for myself that I would have never done before. It was as though I had allowed Ehlers-Danlos to start defining who I was. It was a learning process for me to find a happy medium to accept the diagnosis and move forward as the same happy, outgoing girl that I had always been, but also accept the limitations that were inevitable as a result of my diagnosis.
I am here, three years after my diagnosis, to tell others struggling the way I did that things do get better. The pain and the exhaustion never fully go away, but the knowledge and support that comes with the diagnosis help to push through.
Knowing my diagnosis and finding medical providers that become almost like my family has improved my life beyond words. Finding support groups and people to talk to has changed my outlook beyond measure. That is my wish for all others who are on this journey. Together lets raise awareness and support one and other in this bumpy yet beautiful life that we have been given.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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