By Ellen Lenox Smith.
For years, I would relish the thoughts of an upcoming weekend and even better yet, the three day breaks and holidays. Well aware that these breaks in the routine and mundane were temporary, they would fill my emotions with happiness, a chance to relax and provide the opportunity to anticipate the things I would have time to do with a busy life we lead. But today, living with chronic pain, which includes a rare misunderstood condition, I no longer look forward to those longer breaks as they represent a threat to my sense of security as my critical medical safety net is usually not available, so I have come to dread these periods I once so enjoyed. So now, I instead have to fight the emotions of facing feeling very alone and at times frightened to have to face medical issues on my own without the critical support I usually rely upon. It is just such a transition to go from positive emotions to such negative ones for the same events.
Living with Ehlers-Danlos Syndrome is no picnic. You are born with connective tissue that is deformed and is thus unable to allow ligaments and tendons to function normally. Due to this, we run into some serious problems. For instance, a simple hug from a dear friend, a wrong twist, and over doing an activity are examples of what can cause the bones to sublux or even dislocate. Unfortunately, running to a hospital is not an answer for what is required to relieve the pain created by the structural instability. The answer is to be treated by a manual physical therapist to gently and safely correct the position of the bones. Given the nature of my need for specialized treatment, there are very limited options for weekend or holiday treatment arrangements. On most weekends and holidays, I have no one to turn to.That is where the panic comes comes from – where can we turn for help when those establishments are closed?
If it weren’t for a few good souls that have taken on my condition in my state of Rhode Island, I would not be here to express these thoughts out in writing. These professionals are my guardian angels as they have, on numerous occasions, chosen to ignore all of their professional and personal responsibilities to treat me. They have saved my life, when my sternum and trachea have shifted to the point of compromising breathing. Yet, always lingering in my emotions is that question of what would happen if they didn’t have that moment to steal away from their own lives to help me?
So, I am guessing you are wondering why I wouldn’t just go to a hospital? Believe me, I have tried that a few times when the situation has become so frightening for my family as my life appeared to be in jeopardy making the hospital the only option. Unfortunately, when you share that you need your subluxed bones put back in place, they look at my condition, which is invisible to the naked eye and I am convinced hospital staff think that I am delusional. Instead of the necessary and appropriate treatment, I get blood tests, scans and other suggestions, none of which are needed. I have actually even been hurt by hospital doctors and nurses due to their lack of understanding of my condition. In one circumstance, I my hip was permanently damaged from their mishandling of my body, which is very vulnerable to touch and movement. All I have required was the correct type of PT but I have never found a hospital that has had a manual physical therapist on staff. So again, that negative emotion is supported by the possibility on the long weekends that outpatient therapy may not be available and hospitals do not possess the expertise to help me.The hospital is just not a safe place for me. Just imagine not feeling safe to go to a hospital when most are able to get help there. I wish it was an option for me too!
Along with not feeling like a hospital can be a safe option, negative emotions are also brought on any time we consider the thought of traveling. If I can’t receive the critical treatment in my own community then can you imagine what it feels like to consider traveling away from those manual PT that know what to do to help me? Even if it is during the work week, being away is a huge issue for few manual physical therapists exist in this country and many of those that do exist, are still not even aware of this condition. So, anxiety is also brought on by traveling. What was once such fun to plan out and dream about, is now another example of something that brings on concern as to what we would do if something goes wrong and I need help.
I have not always been a person given to stressing out over the “what if’s” of taking on adventures, but learning to cope with a more complicated, misunderstood condition has now added this to my life. I am not always proud of how I handle the stresses created by my condition but I do attempt every day to stay positive despite the challenges posed by EDS. I work daily to stay positive and doing what I can do to have purpose and meaning in life.
I hope someday that I can enjoy those weekends, holidays and trips without the concern about what we would do “if” something goes wrong. It is one more reminder to me that life is precious, fleeting, and a huge gift. If you have come up with some solutions as how to handle situations like this, I hope you will share them below in the comments. It truly helps to pay our ideas and successes forward to the next person.
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/