How I Find the 'Light at the End of the Tunnel' With Ehlers-Danlos Syndrome

Living with Ehlers-Danlos syndrome (EDS) can be overwhelming, heartbreaking, and full of so many obstacles. Still, it may be important to believe there is still hope to hold on to. Without hope, how can we continue to persevere and face the journey we are on? If your life with this condition is like mine, there may be times when you wonder how you will continue to find hope. But in learning to cope with this daily battle, I have found that sometimes there is light at the end of the dark long tunnel we often travel through.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It took 54 years for me to finally get a proper diagnosis, so that was one long tunnel to walk through. It meant years of being doubted, misdiagnosed, and judged. It also involved reacting to medications and treatments that were not the right ones for me. I was so excited when that light finally came and I received an answer.

But no sooner did I come home with the diagnosis than I again entered a long, lonely tunnel. I realized how few knew about this condition and knew how to help me. I was literally told by my rheumatologist that I would be better off turning to the internet since my EDS was too complicated and was not something he could help me with. I felt lost and discouraged, which led me to help “pay it forward” to anyone who might benefit from anything I found helpful.

That tunnel of darkness was with me for many years, especially as I learned to navigate the system. I learned to travel towards that light by:

1. Addressing My Symptoms

I tried surgical repairs when all my other options had been exhausted. I still attend manual physical therapy to receive help with repositioning subluxations and dislocations and learn how to safely move in my daily life. I addressed my food sensitivities. I also used DNA drug sensitivity testing medications to avoid things that were causing me reactions and inflammation.

2. Advocating for Ehlers-Danlos Syndrome Awareness

As an advocate for people with EDS, I wrote two books to share my experiences to try to help others. I spoke out about EDS at hospitals, medical schools, and support meetings. I even joined Zoom presentations, called insurance companies, and spoke on Capitol Hill and with the FDA. My advocacy led me to connect with the U.S. Pain Foundation, and through this, I have shared what has been successful for me in hopes that it might help others. I also listen to others in distress and offer them compassion.

3. Practicing Gratitude

I have learned to focus on the good I have in my life. I also try to remember that we all have trials to take on, and my EDS happens to be the one I have to face.

There is a saying on my favorite doctor’s wall that grabs me each time I wait for her: When things seem to be falling apart, maybe they are actually coming together. That line jolts me into thinking that in many cases, I have pieced together what was falling apart, and in many cases, I have settled into a new pattern. As you travel through your own dark tunnel with the world on your shoulders, try to keep stepping forward and searching for the light: the people who support you and the things that brighten your day.