We all need to attempt to live with a sense of purpose. We also need to feel that our lives have meaning and value when one is confronted with chronic pain. Unfortunately, meaning, purpose and value can easily be extinguished and often very hard to regain. It then becomes a struggle to figure out just where and how one fits in. So many things that meant the world to you can suddenly no longer be within your capacity to accomplish. Normal daily activities such as going to work, being able to drive, visiting a friend, working out, reading, and shopping may suddenly no longer be possible to engage. That is why one must readjust to these very difficult changes. Initially, this can prove overwhelming.
Anyone living with chronic pain knows what it is like to suddenly feel like life is being shut down around you. It is heartbreaking, lonely, and can be frightening and overwhelming. It is very normal when confronted with these life altering circumstances to question who you are now supposed to be when so much of what your normal daily life was is taken away. Living with both Ehlers-Danlos and Sarcoidosis, I have had to learn to adjust to losing so much but somehow still finding how to live this new life. At one point, I spent four years in a wheelchair. I can no longer lift more than five pounds safely without damage, which has been especially heartbreaking when grandchildren entered my life. I am now limited as to what foods and medications that I can metabolize, and I have felt tremendous isolation and loss recuperating from now twenty-four surgeries. Coping with all these issues has created the biggest challenges in my life but I have learned ways to work on move on, despite all these obstacles.
What I have learned that I hope might help you with these struggles:
- When life first throws these changes at you, allow yourself time to mourn your losses but also remember to not get stuck there forever for at some point, you need to move forward
- Work to identify a good medical team to help you improve the quality of life
- Work to find compatible medication or alternative treatments to help you with pain relief.
- Try to stay engaged with friends and family but also understand there will be some losses of those you so cared about. We all find that some relationships do change. Sometimes, it is due to judgement, lack of efforts to understand what you are facing or also just being unable to do what you could do before your medical issues placed new limits on your capacity to engage in activities you once shared and enjoyed.
- If you can connect, find a support group either online or in person to be able to have safe and understanding connections with people that can help you learn how to advocate for yourself and Attempt to develop a positive perspective despite your altered capacities.
- Seek new activities you can enjoy doing. Many others are on a similar journey of changes. So consider trying to find ways to assist others as they face some of the same challenges you confront. You will find we are not alone at all and many are also struggling with life challenges. Paying it forward can be a therapeutic process. This process may provide some value and meaning to the pain and suffering a chronic pain patient has suffered. It also is beneficial to our wellbeing. Learn the beauty and satisfaction of paying it forward. We are all at our best when we focus on our common humanity. Paying it forward affords us this opportunity.
- And most importantly, remember that this is your life, this is the only one you get to live, so no matter how frustrating, limiting, painful and frightening yours might be, still try to hold on to hope and purpose to have meaning in 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/