I can recall, when first diagnosed with Ehlers-Danlos Syndrome (EDS), which I was born with, having no idea of the limited medical knowledge and attention this condition received. Thus, so many EDS patients like me find themselves in a medical vacuum, so to speak. I now realize that I would have had so much more support if I were diagnosed with something more high profile like cancer. That sounds just terrible to admit, but instead of people understanding my diagnosis, having suggestions and plans of attack, support groups, and even unorthodox treatments to turn to, I am left instead, for the most part, of my own with minimal professional direction. The journey with a less known condition can leave you very alone and lost in the system. Being diagnosed accurately at the age of 54, has meant years of time having past when I could have been seeking appropriate treatment to address a whole host of often debilitating symptoms. There is considerable pain and suffering with EDS, but patients like me have so often had to suffer excessively and more importantly unnecessarily due to the inadequate response to the complex but non obvious symptoms of EDS, which is no longer considered rare by the medical system.
I am now 68 years old and for the past fourteen years, have been working on how to live life with EDS. It has taken a long time to find a network of doctors that believe in this condition and are willing to try to help me. But one huge horror with this condition is the danger of going to a hospital in an emergency, something I wish will be an option for the future.
I find the following goes wrong:
- No one cares about my serious food sensitivities that come with this condition, despite having the MRT Food Sensitivity testing results in hand. Thus, many times I starve in the hospital knowing that eating the food brought to me will only create more inflammation and thus pain. I request the dietician and it doesn’t seem to happen.
- People don’t seem to understand the danger of handling an EDS’er. Just a simple process of putting me from the rescue chair to placing me onto their stretcher has caused permanent damage to the hip that became dislocated by their rough treatment. And that happened despite my son and daughter in law advocating for me while I was unresponsive.
- Despite having DNA drug sensitivity testing in hand showing medications I am unable to metabolize, I have confronted being given medications not compatible and I then pay the price with a physical reaction which exacerbates my symptoms.
- And worst of all, is the fact that I have never found hospital staff capable of addressing the most threatening physical issue I often confront. When my sternum slips in and the trachea twists, my oxygen levels drop, and I am in trouble. But, the one safe way to help me is to shift them back into correct position. This is done safely by a manual physical therapist.
Hospitals just don’t have someone on staff that have those skills to help me. So, I lay in bed, oxygen levels lows, food I can’t eat and medication that should not be given, all just contributing to more pain and no helpful medical intervention. I would so love, as would my husband, to believe that I could be admitted to a hospital anywhere we travel for the help needed but instead, I am left with no help at all except with my manual PT here in Rhode Island. It would be so liberating to think we could go to any hospital and receive appropriate medical support instead of more damage and hardship! In this day of modern technology, it seems unrealistic that we can’t RED FLAG someone like me in the computer system with information and warning for staff to have to immediately to refer to.
May Life Be Kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/