a woman walking during a light rain with an umbrella

by Ellen Lenox Smith

My husband recently received a diagnosis called Atypical Parkinsons. As we learned about this diagnosis, it clearly explained the array of new symptoms he has been experiencing. Although it was not what we had hoped this to be, I was thrilled for him to have a real name for his condition, one where people immediately guided him and provided an umbrella of compassion.

And then, a week after he started his medication to help the condition, his life turned in a positive direction as he displayed improvements already. We hope this will continue to help improve the quality of his life. But on that morning of realizing how rapidly he was improving, I was suddenly reminded why I continue to fight for awareness for Ehlers-Danlos syndrome (EDS) that I battle every day, like so many in this world. What hit me was the reality of still no umbrella of support, plans, and help our way.

Living with EDS, one experiences the following unlike a well-known condition:

  • Years of waiting for the diagnosis—I was 54 when I found out what this was called and I was born with it!
  • Family, friends, and the medical field questioning you, making you feel that this is in your head and need psychological help.
  • Living with a deteriorating condition that causes pain that can travel throughout the body.
  • No medication to ease and slow down the symptoms.
  • Many not knowing this condition exists nor how to even try to help guide you.
  • Constant battles with insurance companies for coverage due to needing to travel to doctors that can safely help you, along with many medications needing to be compounded to remove what we are not able to metabolize.
  • Never knowing what the day will bring next since one squeeze or wrong turn can sublux or dislocate your joints—your life is constantly having to be on cautious mode.
  • Isolation and loneliness due to lack of people accepting this is real. People tend to run away from problems, instead of running towards one to offer help and support.
  • Many times not being able to not join in—too tired, too much pain, not able to manipulate around, not able to keep up, etc.
  • Having to rely on others with the condition for suggestions of how to find help with a medical world still in the dark in many cases.
  • Being dismissed by a doctor for just being too complicated.

So, yes, I feel terrible to admit that I felt a twinge of jealousy when I saw the world put that umbrella over my husband to offer guidance on how to live with his unfortunate diagnosis. I was stuck emotionally once again wondering why those of us with EDS can’t feel this too? Why do we have to prove it exists to the medical world, friends, and family? Why do we do have to prove to all that it is real, causes mind-numbing pain,  is overwhelming, and just so unpredictable? Why can’t we find that umbrella too and experience support, compassion, and plans of attack to help us? 

I will continue until the day I die to fight for awareness of this condition so that someday, that umbrella of help and hope will become our reality too.

May life be kind to you.

About the Author

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 48 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.