Last updated: December 2022
How do we view ourselves and what does that say to the outside world? Having a serious disease challenges our identity at every turn. For those of us with a chronic disease like multiple sclerosis with no known cure, the question of shifting identity can be challenging.
MS wasn't going to change who I was
From the beginning days with my MS diagnosis, I was fairly confident in saying to others, "I have MS," aligning myself with the profile of people who have relapsing-remitting multiple sclerosis (RRMS). There were treatment options, and from all I read, I could expect to live a fairly normal life outside of having MS. Having MS didn’t mean changing my life, and I could continue on the same path. MS wasn’t going to change who I was. Or at least that’s what I thought.
Reality set in
Then reality set in – living with MS began to peel away at my identity in small ways. I walked slower and eventually began using a cane for balance and safety. The everyday activities I once did became more difficult. No longer could I be in the summer sun tending to a garden or pulling weeds. Vacation times and locations became more focused on weather conditions and what the physical demands might be, rather than where I really want to travel to next.
Major identity crisis
Being accountable at my job, five days a week, became the next challenge with MS. Eventually I went onto disability and was medically retired from an institution I had worked for over 26 years. There were no grand retirement ceremonies or even the chance for meaningful goodbyes and closures to that professional identity. There is a major identity shift when you go from working full-time to being medically retired and on disability. This change is not only internal, but also linked to how others view you, and both come with lots of emotional shifts.
Adapting to changing identity
Each time I’ve faced a shift in identity, I’ve been able to respond by creating alternatives. I hired help with my garden and can enjoy the outdoors as an observer; we found ways to travel in the off season to otherwise hot summer spots; and I select activities that suit my physical abilities. A sense of sadness descended on me while thinking of the things I would love to do, but was replaced with a new sense of appreciation for what I can still do. Maybe this adaptation to a shifting identity is my way of coping with changes that I have little control over.
Reshaping my ever-changing identity
I’ve reshaped my professional identification with new activities focused on MS advocacy and research, particularly with iConquerMS. I doubt that I would still be a reliable employee five days a week to do a full-time job, but I keep mentally active with the challenges of advancing MS research. It’s a different kind of work, and definitely a different identity that gives me satisfaction.
I realize people go through identity shifts through their lives as they age, face illness such as cancer, or adapt to living with MS. My identity through six+ decades was going to change, that’s a natural course of life. Having multiple sclerosis just adds one more factor that contributes to my ever-changing identity.
Wishing you well,
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: