By Ellen Lenox Smith.
No one plans to become disabled. For many, it happens slowly as a condition progresses and for others, a horrible accident may alter one’s life dramatically and permanently. The immediate impact of a life changing disability can be overwhelming both physically and emotionally as one’s life takes an inevitable turn in new directions as they face these challenges. It becomes life changing not only for the person inflicted but also for those that have been part of their life.
When I suddenly became unable to walk, due to the extreme nature of the physical symptoms produced by Ehlers-Danlos Syndrome, I was forced to accept a life in a wheelchair for four years. The first thing I noticed was the gradual loss of many of my friends of long standing. Also, those that held onto our friendship seemed at times uncomfortable and insecure in attempting to relate to the “new me”. So, I had a new mission to accept and learn to live with:
#1 – A life without those friends that could not handle the “new me”
#2 – Learning how to help those that chose to still be part of my life be more comfortable around me.
I found it so difficult to understand why someone, who had been my friend and reached out to me before, would not want to continue our relationship just because I was now disabled. I didn’t ask for this to happen to me! Disability causes us to learn to accept so much when this happens to our life, but to have to add loss of friends is heartbreaking, to say the least. You are left wondering, is that how I would have reacted to them? And it makes you question yourself and what you mean to others, if it is that easy to eliminate you from their life.
What crosses my mind as to why they pull away:
- Is it too heartbreaking to watch this happen to someone?
- Does the disabled friend, who is not able to do what they could before, leave the other person at a loss as to what to do around you, how to accommodate you and confused as to how to continue to include you in their life activities?
- Are they too busy with their life to take the time to understand how frightened, lost, and left out we are left to feel?
- Do we represent sadness in life now and for some, that is just too overwhelming?
- Do we become more work and an inconvenience to them?
Can We Help Hold Our Friendships?
- I found while living life in that wheelchair, that I needed to demonstrate “I was ok” and “still the me” they knew, but a revised version.
- I found humor works well lightening the air about the new life I was to cope with. If they could see I could joke about this new challenge, then maybe they could see through the disability and remember that “me” they knew before becoming disabled.
- Despite my struggles, I find it important never to stop caring about others and showing compassion for others struggles in life.
- I find it important not to compare and claim my issues to be more of a problem than others. Instead, I accept that we all have challenges in life to face and we should not make these issues a competition.
Becoming disabled is heartbreaking, confusing, limiting and life changing, to say the least. Many of the changes that come with disabilities are about loss. The loss of valued relationships can transcend and magnify all of the many other losses the disabled experience. The physical pain experienced does not need to be compounded by the often extreme suffering resulting from the loss of valued relationships. The social isolation, which can result from such losses, can be as damaging as the injury or disease itself. Sometimes we have to be the stronger person to let others know we are coping the best we can. However, imagine how nice it would be to not feel discarded by others but instead embraced. May we find ways to hold on to those that matter to us in life, no matter what comes their or our way, to cope with.
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/