By Stacie Prada
Living with multiple sclerosis, I find I repeatedly need to accept my diagnosis and reality. I have moments where I feel great and totally at ease with my health, life and possible future decline. Other times I have symptoms ramp up, and frustration and fear can leave me rattled.
I’ve been living with my diagnosis ten years, have likely had MS at least another 15, and have accepted my MS diagnosis. Unfortunately, it’s not a one-time event or accomplishment. Friends who were diagnosed 20 and 30 years ago also periodically need to adapt to changes in health and abilities and accept things are different than they’ve ever been. I find the process of encountering challenges, adapting, and coming to a place of acceptance is a life skill that we use repeatedly. Sometimes it’s easier and feels seamless, while other times the challenge is harder and the process takes longer.
If I compare myself to people with terminal illnesses or living with disabilities far more limiting than my own current condition, I’m grateful that I am still active and quite capable. When I’m not feeling great and I compare myself to people that appear to be healthy, active and without any illness, I sometimes feel sorry for myself.
A book I once read described how a person with MS went to a rehabilitation center for people with all types of issues. The people who were para or quadriplegics due to injuries were deemed better off than people with MS, because their trauma and damage was done. The people with MS would continue to experience disease progression and decline in health and mobility at an unknown rate. I appreciated hearing that perspective, since the fear of the unknown and inability to prevent probable decline is an added mental burden to conquer. I’m thankful that medications to slow MS progression exist, but I’m not arrogant enough to think it will prevent my decline. I am hopeful that myelin repairing medications will be developed and will someday be available to us. I hope this is in my lifetime, but I anticipate it is more likely to benefit those that come after me.
I’ll compare how I’m doing with others, and I’ll appreciate that my health is still highly manageable. I’ll be thankful that I’m able to do so much still given MS has done a lot of damage. To me, the result is that I have an appreciation for their struggles. I make it clear to others that I don’t know their hardships. I merely feel a kinship to them and wish them well.
I do feel like I’m experiencing bodily issues that may come with normal aging, but I have them 10-20 years younger and for a different reason. Often people will respond to an issue I’m having with, “You’re too young for that!” They’re right. Yes, I would be too young for that if I were a healthy person without a chronic illness. But I have MS, and that means I’m lucky my problems aren’t worse. I may actually have been staving off these issues longer than other people with MS have.
I think it’s normal and even pretty difficult to avoid comparing ourselves to others. I think it’s what we do with that mentally that matters. If I can build kinship and compassion with others instead of feeling resentment or self-pity, it builds a sense of gratitude and provides a reality check that helps me cope with my own condition. Feeling compassion for others can help us build compassion for ourselves, cope with MS, and accept our condition.
When I see others living seemingly without any health limitations, I try to remember that I too used to think I was as healthy as a person for my age could be. I was very active with early morning workouts, running competitive races, and doing gymnastics through my late thirties. In hindsight, I can see that I was living with MS for at least 15 years while experiencing relapses that I chalked up to normal aging, stress and health issues. This reminds me that people we know may be living with as yet undiagnosed conditions like heart disease, cancer and/or autoimmune diseases.
Whenever I think during a race or fitness class that doing this is harder for me than others and no one else knows what I’m going through, I try to remember that they may be living with and overcoming unseen challenges too. It reminds me to just do my own thing and push myself at a level right for me.
I think whether we think someone else’s condition would be better or worse than ours really depends on each of our levels of resiliency, biology, approach to life and sense of self. One person can feel depression and not make it through, while another can experience similar circumstances or diagnosis and find a greater sense of purpose. Boosting our coping strategies is necessary to live with and possibly thrive with chronic illness. Strong personal relationships and sense of place in social, community or religious organizations help us live beyond our own thoughts. A network of medical care providers with a counseling component can address our physical and mental health needs as they change. Finding a sense of purpose that extends beyond our physical or cognitive abilities can help us accept declining health as best as possible.
I think it’s great to look to others for suggestions, inspiration, motivation and connection, but I think it’s necessary to value our individual strengths, weaknesses and preferences in order to find our own path toward acceptance and purpose. It helps to look around, and it’s crucial to look within ourselves. Often our best path forward isn’t following someone else’s, it’s the one we create for ourselves.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/