By Ellen Lenox Smith.
Life can be overwhelming when one is trying to cope with navigating through the medical system, especially with a complex, less recognized condition. When I was finally diagnosed correctly with Ehlers-Danlos, at the age of fifty-four, a condition I was born with, there were few sources to turn to for help. Very quickly, I found myself having to try to figure things out by myself. It obviously would have been much simpler to have been diagnosed with a more recognizable condition that would have provided time tested and proven treatment choices to include reliable plans, compassion, and medical expertise. At the time of my diagnosis, the medical profession, for the most part, had little to offer those with my condition. The most important person in my life following my diagnosis was not a doctor but a fellow patient halfway across the country. I would learn from this person’s painful journey, which would prove invaluable in my search for effective treatment of my relatively rare condition. Just as my new medical mentor friend would provide me with guidance and direction, I realize we all need to consider accepting the responsibility to assist our fellow patients, as we may prove to be each other’s best source of guidance.
So, in time, as I learned what was in my control. I realized it was appropriate to pass it forward in hopes that the next person’s journey wouldn’t be as lonely and without direction as I faced for so long. I think if we could all work towards this mindset of passing knowledge forward, we can greatly help to educate not only others in our circumstance but also the medical teams we interact.
I would like to offer some suggestions as to what you might consider doing to help others like you:
- Consider setting up a website for a sharing format. This is the one our sons set up for us: https://ellenandstuartsmith.squarespace.com/
- Consider starting a support group where speakers can be brought in to educate. We make a point on keeping ours as an educational format instead of a place to whine and complain only.
- Consider offering to use your voice to share your knowledge gained. We have presented to new medical students to make them aware this condition exists in hopes they will help their patients receive a timelier diagnosis.
- Consider offering to help educate and support in your own home. We have had many sent to our home, per requests of doctors, to help get people organized, offering what has helped and sent them off in a positive direction.
- Consider writing to voice your knowledge and share it with others whether it is a letter to the editor, an op-ed, or something submitted to an online medical newsletter, for examples.
- Consider setting up a list of medical professionals that are willing to take your condition seriously and are willing to work with you. There is nothing more horrifying and discouraging than to wait to meet a new doctor to only find yourself being turned away through their lack of interest and knowledge of your condition, after meeting you. Imagine steering another to someone that cares instead, in hopes they can get the right support and help.
- Consider, as you are listening to another that is struggling, that if their symptoms sound familiar to yours, suggest they might want to consider looking into the name of what you have. And offer to be there for them if it is the same condition. You, too, could be that medical mentor to help one’s journey.
My husband and I believe that we need to help our fellow man and show compassion. This applies to medical issues that one can feel so confused and frustrated trying to cope with. Trust me, sharing what you have learned that has worked or not worked, just might make a big difference in someone else’s life. As we struggle to feel purpose and meaning back in our own lives, you will find the reward of reaching out to others will help bring meaning back purpose back to your life.
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/