Published: 24/01/2020

The emotional toll of being doubted

In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal. 

At 36, I had my first spinal surgery, a cervical fusion, in order to address upper back pain and the loss of function of my arm. I could not carry my children, and just before surgery was drinking from a straw because I could not even lift a glass. 

While at the gym when I was 39, I fell to the floor in pain and was unable to get back up. I was taken in an ambulance to the closest hospital and told I had more herniated discs. Again I was told that sometimes this happens and I should stop questioning why. The doctors explained that herniated discs go back on their own, but I only got worse. A cortisone shot caused such horrible pain that I just sat on the floor afterwards in a dressing room and cried. I eventually had a microdiscectomy after weeks or crying and crawling around on my hands and knees. My PT told the surgeon that I had lost reflexes and was not able to even do physical therapy exercises. I immediately got some relief from the surgery and slowly bounced back.

During that time I was a principal, and a teacher started a rumor that I was faking my illnesses and injuries. I left my job because I could not simultaneously handle all of the medical issues and the emotional toll of people doubting me. The pain in the rest of my joints increased and the pain in my back and leg again became unbearable. I had trouble even walking through a mall. The disc I had surgery on and the one above it were both herniated and pushing on nerve roots; and again I lost my ankle reflex and was in continuous pain and dragging my foot. 

My neurologist told me that all middle aged women get these problems. He said that I was making a mountain out of a molehill and that the pain would go away. As I cycled between physical therapy, acupuncture, and pain meds, I again dealt with people around me just not believing me. A coworker told me I was too young for these problems, and many people I knew rolled their eyes when I mentioned anything about my health. I cried in a rheumatologist’s office as she told me, “some people just never find answers” and that I should learn to manage my pain. 

I stopped talking about my issues at all and started to give up on ever being active again. I had ignored my usual health check-ups after seeing 11 specialists in a year. I found a new gynecologist, after years of not seeing one, who had me fill out a quick health history and then listened to me talk about all of my issues. She grabbed my arm and said, “I think you have a connective tissue disorder.” I literally hugged her and cried when I left her office at the thought of someone caring enough to find out why I was so broken. She sent me to a geneticist and he diagnosed me with Ehlers-Danlos syndrome very quickly. At 43, I had someone look me in the eyes finally and say “I believe you.” 

I am about to get another back surgery just days after my 45th birthday. I still have many health conditions, but I now have a community of people who understand them. I still have trouble finding doctors who even know how to spell Ehlers-Danlos, but I also have some who are very willing to learn more. I wish I had not spent four decades blaming myself, or feeling like a failure for always having an illness or injury, but it feels great knowing why my body does not function like others. 

We zebras are a strong bunch, even if our connective tissues are not.

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