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Thriving with EDS – Accepting the Diagnosis Leads to Adjusting and Action
(The 4 A’s to Answers: Awareness, Acceptance, Adjusting, Action)
I had a very hard time accepting my EDS diagnosis even after the confirmation of my genetics with undeniable blood work. I thought that I wouldn’t struggle with this part because it validated so many of my excruciating experiences of living in my body. But none of that mattered emotionally. Emotionally it was hard to accept the EDS diagnosis. For a few years, I practiced denial and so the diagnosis never really sunk in. That was until my second serious neck injury. If mission control was my brain, then I was running the risk of losing everything with these neck injuries. It was one thing to break my foot from my ankle rolling over but quite another thing to break my neck and be so dizzy that I couldn’t drive or lay backward at night to sleep. Or worse, tear an artery to my brain! I found my proverbial bottom with the second neck injury. I was incapacitated by it. From fear and risk of more injury, I was homebound and helpless in a lot of ways for weeks.
Finally, at the pain doctor, who was one of the most practical doctors that I had ever met, I got the message. What I liked about him was he thought the treatment all the way through. Anything that I wanted to do or try for temporary relief was always a long-term problem that I could potentially create for myself. There was no easy solution to EDS. I appreciated him because he knew more about connective tissue disorders than any doctor that I had ever met in my small town. I appreciated the fact that he didn’t just think in terms of knees and elbows but all the connective tissue of my body. He used the words “chronic condition” and life-long. It really hit me. I cried all the way home from the appointment realizing he was right. This EDS was not going away and the only thing he could offer was a strong suggestion to do physical therapy and stick with it like my life depended on it because quite frankly it did. He repeated the name of the physical therapist that he mentioned last time and I realized that I “dropped the ball” and never followed up by doing PT like he said the first time. He and I agreed that pain medication won’t solve my problem structurally. He and I agreed that Tylenol and natural remedies were my first line of defense and needed to be my first choices due to my stomach sensitivity and to prevent side-effects. I needed his guidance and his rational thought because I was just too emotional. He was talking logic, common sense, and reason. I was swirling with emotions that I had never felt before. It was a mixture of despair, hopelessness, fear, anxiety, heartache, heartbreak, grief, relief, and hope. I didn’t have a name for this complex feeling.
On the way home I realized that I needed emotional support for my EDS. This was hard to handle. This was tough to take. I was facing a life sentence of health issues and painful injuries. I was facing major restrictions on all my activities. I was facing a different life than I had planned for myself. I was facing the rapid deterioration of my body. I had to accept and adjust while grieving the loss of my life before the diagnosis. I needed support. I also needed the motivation to go to physical therapy and stop blaming my last knee injury on PT. I had hurt myself doing moves that were too hard on my joints. However, that PT was before I knew I had EDS. Now, I would be more careful and more aware.
The next morning, my epiphany came during the morning meditation. I started with an inspirational reading that talked about a simple yet profound parabole that Jesus had told people. It was the one about building a house on sand or stone. It was a story reminding us that the rain and winds of life come to everyone’s house at some point. However, those who build on stone will still be standing. I needed to still be standing. I had a young child to raise and who needed me. I needed to make my body the rock. Physical therapy could get me there. Being practical and taking advice could get me there. I knew that life was going to happen to me, the rains would fall, I needed to build my house to be strong if I was going to have a chance of standing. I could thrive with EDS if I listened to my body and to this one practical doctor’s wisdom. I had new hope.
Thriving with EDS
First Things First: Accept The Diagnosis
It wasn’t until my second neck injury and my second dislocated knee, that I finally had to admit to myself that I have this condition. I need to accept my diagnosis because aging and a connective tissue disorder didn’t quite mix – to say the least.
Yes, the genetics report came back positive for not one but two variant connective tissue genes. Yes, I was diagnosed. Yes, I knew I was different and felt different. But, no, I didn’t want to accept this. I tried a year-long denial of the disorder. Basically, I ignored it. I ignored my body. I put all the physical problems plaguing me on the back burner and did not put a team of experts together for myself and condition. I just wanted natural remedies to cure it all. I wanted an all natural approach. But was this doable? No. I had already proved that I couldn’t survive without the two abdominal surgeries in 2017. I had 5 organs removed from my body! All struggling in some way or another. My problems were nothing that eating vegetables and avoiding most of life could fix.
So, there I was sitting in bed, unable to move my neck without losing consciousness due to my neck being so unstable. There I was booking another doctor’s visit and trying to avoid an Emergency Room visit and call to an ambulance, which I found embarrassing and frustrating. People didn’t know what EDS was in the ER. And so, they certainly didn’t know how to treat it. I needed specialists, yet I lived in a remote area with very little knowledge of rare diseases.
First thing was first, I had to accept my diagnosis. From there, I could advocate for myself. I had to admit that I had Ehler’s Danlos Syndrome. I had EDS.
This was not easy to admit. I had my pride blocking me, but this condition was humbling me. Not being able to get up from the floor with my neck out and feeling so extremely dizzy that it felt like a loss of consciousness and control was my bottom. The bottom being that place that I could not allow myself to go further down. From there, being only in my thirties, I had to ask for help. Then, I need to accept the help. First things was first, I had to take the condition seriously and accept that this was the genetic “hand I was dealt.”
I had to ask myself a very emotional question, “What does fully accepting my diagnosis mean?”
I realized that I had to recalculate the life that I thought I would be living. I had to readjust my hopes, dreams, and expectations of myself. I had to reconsider my purpose, work, etc. I had to recraft my life to fit my diagnosis and make the best of it.