Wishing the Hospital was an Answer in a Crisis

Wishing the Hospital was an Answer in a Crisis

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.

Ellen Lenox Smith

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/

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Authored by: Ellen Lenox Smith

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The Insufferable Movement

Thank you Ellen for raiseing awareness on issues that face our fellow Beautiful Pain Warrior Zebras 🦓! I agree.. sadly more damage can be done at ERs than help to be had with EDS and All the many comorbid issues we face or may need emergency treatment for. I had to go not long ago for a severe POTs crash and needing emergency saline and steroid infusion, and though armed with documentation medical records, after naming my symptoms and also telling him from past experience what I knew I needed to treat me, the Emergency Physician suggested I had might have a ‘stress issue’ ( a very placating response to get from a male doctor already as a female and treated as if my physical symptoms are a hysterical one, but that’s another story for another day..) But his tune changed Rapidly after he had a minute to both had a minute to consult some medical journals and did a tilt table test on me as they watched my blood pressure rise and crash over 40 points within seconds of each other… the poor young nurse turned white as if she thought I would die in front of her so I had to reassure it was normal for me. After he was more than willing to infuse me thankfully. As EDS Zebras and as part of the greater rare/ invisible disease community it’s vital we spread awareness about her condition to help both educate doctors and be a resource for other sufferers that can’t find out or explain their illness yet by knowing they suffer from a rare disease or genetic disorder.
God Bless! The Insufferable Movement on Facebook
Lindsay 🦓 and Michael


Ellen,I agree with you that all Hospital’s in R.I. at least should Red Flag you.I am surprised with all the advanced technology they don’t have a proper Treatment Plan laid out for your Condition.That including the Parametrics as well. I also live in R.I and with all my allergies,each time I am an inpatient someone has always sent a Dietician to talk to me about which foods I have to avoid.This is just horrible all you have gone through and to think these Hospital’s aren’t prepared to handle your EDS is inexcusable.The Hospital that I go to is Local and we have one pulmonary Dr at the moment who I am a patient of and also a physical Rehabilitation unit as well as Pulmanary Pt.I would like to think someone in Pulmanary Pt would know how to deal with EDS without causing more harm to the Patients.I am a long time CPP and do not have EDS but my Heart goes out to you for all you have been through and yet still having a positive attitude as I have read many of your Articles.I have several family members who are Nurses at this Hospital in R.I.and I will ask them if they have the proper sources to handle an EDS Patient and also my Friends Husband who is a paramedic.After all they are known to Red Flag Drug Seekers and that being said I would think your Condition should be Priority.Wishing you all the best and and pray there will be a safe Treatment Plan in place in the event you need Treatment that will not cause you more harm.

Lynne Mathis

Thank you for your latest article/comment .Your articles /letters are always full of useful info I suffer with RA diagnosed@ 24 I’m 65 now so I get the frustrating issues that confront being in pain for many years ….but once again thank you for helping me realize n remember there’s always people hurting more HAVE A BLESSED DAY ✌✌✌