By Ellen Lenox Smith, Columnist
It took over 50 years for me to be diagnosed correctly and to finally understand what I have been suffering from for so many years – sarcoidosis and Ehlers Danlos syndrome. The latter is actually something that I was born with.
Every day of my life, I have to work to get through the day in as positive way as I can muster. Yet, it is clear people still don’t understand how brave I am trying to be. I am still in need of support. I live with two incurable, painful conditions that will keep progressing.
Despite these diagnoses, last month I was discharged by a nurse from a support organization called Vital Decisions. After taking me on as a client on their own initiative last April, it was stated that their requirements had changed to continue with a client.
Since they believe I am doing a good job, with my husband managing my health and making the necessary decisions one has to face, I no longer qualify for their support.
Believe me, I knew where this conversation was going, for this was not the first time this has happened to me. You put on a smile, adopt a positive attitude, take on your health conditions, work hard to live life with them; and then someone assumes you must be all set and you are sent off on your own. Something is just wrong with this process.
With long term chronic pain, others need to understand that even those of us presenting positively still need their support. It takes a lot of work to keep the spirits up, act pleasant around you, and act like life is normal. Don’t think we aren’t at times scared, overtired, and overwhelmed from living with pain.
And believe me, even on our good days, you would not want to climb into our bodies. So, we still need you to care about us!
I have had friends disappear since my story is too sad to be around. I have also had to live with judgement due to my smile -- which is seen as a sign that I must be doing just fine. But would you rather have me be that miserable person that is angry, lashing out at others, and giving up on finding purpose and meaning to my life?
And, how is it that in that same week I got discharged from Vital Decisions, another doctor sent me a note that his practice is putting me in their new program called the Specialty Care Center, which will help support me with my cardiac issues? Am I the same person that just got let go by my support nurse?
If you see someone you know coping with a difficult medical issue, please don’t assume that they are just fine if they have a smile on their face. Ask them how they are doing, let them vent, care about them, and be proud of them for trying to get through a difficult journey while being pleasant.
Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.
For more information about medical marijuana, visit their website.
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 Pain News Network.