By Ellen Lenox Smith.
We seem to be living in a period in which long held norms of civic life have been callously discarded. As a result, our life has been infected with an interpersonal toxicity, producing a level of collective anxiety undermining our sense of mutual respect. Thus, we are missing the capacity to address our problems in a cooperative manner. For those of us confronting chronic medical conditions, we often have to add chronic pain to our daily lives. If we don’t try to stay positive and attempt to create purpose and find meaning in our lives, it is easy to feel like we are drowning. I have had a long slow journey in attempting to find peace while confronting challenges which will be with me for the rest of my life, but I have learned that I need to attempt to embrace a level of maturity which will allow me to learn to forgive and return to believing and trusting.
With a little understood, complicated condition, called Ehlers-Danlos Syndrome, one can share many experiences of being judged. It gets so old hearing “you look fine” along with the implication that if you look fine, then any effort to share concerns relative to your health are met with the attitude that it must be in your head. It is heartbreaking and terribly humiliating confronting such unwarranted negative attitudes as you may be in a fight of your life. One is attempting to return some normalcy back to life, despite having to accept loss after loss, often having a serious impact on your physical and emotional sense of well being. The hurt becomes even more complicated when judgement and hurt comes from those that mean the most to you – family, good friends and the medical field you need support from. I have had to work hard to believe in myself, not listen to the judgement, and somehow find a way to deal with these attitudes.
My first unexpected step was to turn to writing. I originally vented in poems in an effort to attempt to come to terms with this hurt. I was shocked with the need I had to sit and express my emotions out in the form of poems, an activity I really never had interest in. Someone suggested I had been visited by a muse after I had written over 100 poems. In time, I actually ended up writing a book, too, sharing the hard journey of acceptance to live this new life. I then became a writer for Pain News Network and now today, National Pain Report and 1000 Watts Magazine. Through these steps, I have learned to live with strength and purpose, despite this hurt that even today, can still happen and set you back.
I have found getting stuck on anger and confusion as to why those that care about you can be so insensitive, doesn’t help things get better. Punishing them and pushing them all away will leave one alone and not someone that others will want to spend time with. I found forgiveness, for sometime, was something I was having a difficult time emotionally accepting. Those people had hurt me, even though intellectually I was aware that the hurtful acts were unintentional. I could not understand how someone could be so judgemental and fail to simply take a few minutes to understand more fully my situation. This was especially difficult to process emotionally when coming from individuals claiming to care for me. I do not treat others like that so I had trouble dealing with receiving this type of treatment. For years, I avoided dealing with the emotional toll this issue was taking until I met a doctor who took the time to address the negative emotions being generated by this type of treatment. This caring individual assisted me with empathy and understanding. As a result, I feel that I am managing my emotions in a much more productive manner. As patients with chronic conditions, we simply cannot allow our emotional lives to undermine our physical challenges. This will happen if these issue are ignored. Today, I have let go of so many rough experiences of hurt and have to admit it is amazingly liberating to eliminate such unnecessary negativity and discomfort in my life. For those of us living in chronic pain or with permanent disabling conditions, the last thing we need is another loss and the loss of positive feelings towards those individuals who we have had meaningful relationships. I only hope that you, too, will someday be able to learn to forgive these people and learn how much better you will feel as a person. But I understand, it took years for me to begin to accomplish this.
The emotional trauma inherent in the process of dealing with chronic medical conditions can lead to an individual becoming insecure and contribute to one losing the capacity to trust. This insecurity can only add to a patient’s burden and potentially impact on an individuals already compromised physical condition. This impact can be intensified when one suffering from a chronic medical condition faces uncalled judgement. We need to try to have faith that the emotional pain inflicted upon us by the closest to us, has not been intentional. With this as a starting point, this issue can try to be dealt with. I don’t enjoy when this lack of trust becomes part of me. I believe when I am able to return to starting with trusting, instead doubting someone, I am a happier person and much more comfortable with who I am. It is not something that comes back easily to trust when so many have hurt you and let you down, but to be stuck in that mode has negative aspects to one’s health and whole being.
So as you, too, travel daily in the difficult journey living with chronic pain and/or permanent physical disability, may you find the strength and courage to be that bigger person, learning to forgive those who have hurt you and allowing trust back into your life. The freeing feeling I now live with instead, is healing and worth the letting go I have experienced.
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/