Reframing a diagnosis: What can be learned from MS
Written by guest contributor, Nancy Chamberlayne, M.Ed.
I knew I needed a purpose, to contribute and feel stimulated, to always feel like I’m learning. Volunteering allows me to accomplish all these things, but at a pace that lets me manage my MS.
Reframing a diagnosis of multiple sclerosis as an opportunity for learning is a challenging task. When I was first diagnosed, I struggled to think I could learn anything from a disease that robbed me of many physical abilities and my profession as a counsellor and teacher to adolescents.
Soon after my diagnosis, I learned to transfer my professional skills to volunteer activities to achieve fulfillment. I knew I needed a purpose, to contribute and feel stimulated, to always feel like I’m learning. Volunteering allows me to accomplish all these things, but at a pace that lets me manage my MS.
For the past 22 years in British Columbia, I’ve been facilitating MS self-help groups that provide support and education; giving presentations about MS, self-worth, bowel management and other issues; and writing for disability publications on topics like hiking with a scooter and bladder control. I have chosen to learn from MS and teach others what I have learned, rather than let the disease shut me down.
During a self-help group discussion, I asked other group members if they had learned anything from their experience with MS. They too found it difficult to reframe the disease as a learning opportunity, but they revealed that their interpersonal skills had improved, their expectations had changed and they had discovered talents they didn’t know they possessed. Members would then go on to teach me even more about what can be learned from MS through their own journeys with the disease.
Personal growth can come in many forms. It may mean becoming more assertive, especially when advocating for more effective healthcare. Since being diagnosed with MS, many group members gained confidence in telling family, friends and even strangers when they don’t feel heard, when they need help and when they disagree.
With loss often comes a decision to let go — let go of old ways of doing things and old expectations. With MS, physical abilities are often compromised, but people can learn to adapt to a cane, walker, wheelchair or scooter to remain active. Adapting to new situations is a learned skill that requires acceptance, flexibility and creativity.
Discovering hidden talents
MS can also enable the discovery of hidden talents, especially in the fine arts. One member of my self-help group started painting in the hopes it would take her mind off the pain. While discovering she could indeed “paint through the pain”, she also discovered that she was skilled with a paintbrush. Painting is a favourite activity among several members of our self-help group.
It can be hard to believe at first, but a disease that takes so much away can also teach. After the initial shock of diagnosis, so many of us have learned new skills and gained new life experiences because we have been open, aware and proactive in pursuing them.
We are not victims — we are the scholars of our lives.
I want to thank all members of the South and Central Vancouver Island Chapter’s Living Well with MS self-help group for their thoughtful and insightful contributions to this article.
Read the whole story in the Fall/Winter 2014 edition of MS Canada.
Find out more about MS Society self-help groups in your area.