Thriving with EDS – Accepting the Diagnosis Leads to Adjusting and Action

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.