My cousin, Gretchen (not her real name) received a MS diagnosis last week. She is in her late thirties. Oh so young. <sigh>
Having lived with MS for almost 15 years, I know those first feelings of overwhelm, worry about the future and fear. I sent her a short Facebook message (that’s the new way of communicating these days) of encouragement. Perhaps you will find it helpful as well…. whether you or someone you love is receiving a new life-changing diagnosis.
Good morning Gretchen, I just heard the news about your MS diagnosis and I want to let you know I am here if you want to talk. I am a good listener. Just a few things I have learned that may be helpful. 1. Learn all you can so you can make the best choices for you. It may not feel like it now but you are the captain of your MS team. 2. Stay in the here and now as the future is unknown. Your journey is unlike anyone else’s. 3. MS is not a death sentence. Yes, it sucks…. But it has some gifts, too. 4. Email me at …… if you want. (I am an OT, too, remember). 5. Sending hugs!
As an occupational therapist, I was trained to teach, problem-solve, and offer advice. It is often difficult for me to step back from telling and just listen but I have learned over the years that “the illness story” needs to be told as part of the grieving process. Just listening without judgment and/or offering advice is the greatest gift. That said…. sometimes we get caught up in our stories and become that illness. That is NOT healthy and it is not the subject of this post. We are not our illness!
In the initial stages of overwhelm and grief, it is easy to give our power over to the medical community and our family as they know best. But do they really know? Science and the medical community have much to offer but their model of care is reductionist. In other words, it is problem-oriented vs empowering. As an OT working within the medical model, my notes and treatment plans were based on problems performing daily work or self-care tasks rather than personal strengths.
As a patient, I was no different. I was focused on problems potential obstacles related to my diagnosis. For several years, I would find myself thinking about life in a wheelchair and needing total care. I thought I knew what lay ahead for me based on my experience as a therapist. But I was wrong…. so wrong.
My symptoms leveled off when I began to explore alternatives like acupuncture, massage, diet, and yoga. I sought out practitioners that supported my goal of living well and let go of those that didn’t. I keep up with the science but am learning to trust my gut (my inner healer) for my highest healing potential. I have become my advocate.
With illness as my teacher, I am learning and living the self-care that I used to “preach” about. I have no idea what lies ahead for me and my travel companion (MS) but I do know that LIFE is GOOD right now, today. Worrying about the future and regrets about the past are not helpful.
If you are newly diagnosed or have struggled for some time with an illness, I send love, encouragement, and many blessings. You are not alone.