Published: 28/10/2019

I now listen when my patients tell me, “something is wrong.”

I used to believe that I was just sensitive to pain and not as strong as others around me. To be truthful, I was average. Compared to my sister I was miles behind her in athleticism and energy, although I would attempt to keep pace in all walks of my life.

I started noticing health issues in college. I was a distance runner and had to quit running over 3 mile distances without having exertional fatigue for days. My senior year, I almost ruptured my Achilles’ tendon from wearing unsupportive shoes around campus.

Fast forward a few years, I was 26 weeks pregnant and went into a rapid tachycardia which remained throughout my pregnancy. I was promised a c-section for my second pregnancy 4 years later, as I was too scared to go through what I did the first time. I was blessed with two beautiful and healthy baby boys, but pregnancy and labor/delivery were disfiguring for me with my first, and I still struggle with PTSD from it. I also had major abdominal wall reconstructive surgery from 3 severe abdominal hernias repaired as well as a tummy tuck in March of 2017 (10” of skin removed from my belly), all of which were from being pregnant.

Fast forward to last summer, when my multitude of symptoms overtook me in June of 2017. I was having severe neck pain, muscle weakness, exertional fatigue, and required a nap almost daily to keep going. I was miserable and depressed. For years I had been misdiagnosed, and I was told my symptoms last summer were from “stress”. It was at that point that I was desperate for an answer. I knew my symptoms and the past injuries I had endured were not just coincidences, and that something was VERY wrong.

I had to be an advocate for myself. I researched and looked into what all this could be, and why did I have to always do things, “the hard way”? Why couldn’t I be as athletic or have as much energy as my sister? Why did I have such terrible pregnancies and deliveries, when most everyone I knew did not endure these?

In comes another person into my life with similar pregnancy complications, tendon injuries and fatigue. She had EDS.

My own doctor was unsure and somewhat dismissive of what I thought I had. I demanded to just be referred to rheumatology for further evaluation.

Now finally being diagnosed and having some answers, has helped me to regain a lot of myself back. Some days are better than others. I have now added to my list of health conditions, of Postural orthostatic tachycardia Syndrome, mast cell activation syndrome, severe narcolepsy and hEDS.

I am still in recovery mode. I am a doctorally prepared Nurse Practitioner, a mom of 2 healthy boys and wife to a busy farmer. I now work 3 days a week, but I’m thankful to have some of my life back. I am also hopeful that this will not hold me back or break me from accomplishing dreams and goals I have for my life.

I now listen when my patients tell me, “something is wrong”. Always listen to your gut and don’t be afraid to advocate for yourself.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list