The Changes in Me Since My MS Diagnosis: Kinship and Nurturing My Well-Being

By Stacie Prada

Experiencing life events and trauma can change a person. We all experience life milestones and challenges, yet they are so personal and timed differently for each of us that how we react or change is never the same. Losing a loved one or experiencing an illness is different when experienced as a child, a young adult or as an older adult. Our expectations and life skills are different at each point in our life, and what may be life changing for one may be life affirming for another.

As I reflect on how being diagnosed with multiple sclerosis and living with symptoms has affected me, it’s difficult for me to separate it from everything else I’ve experienced in life. Generally, I think that having MS accelerated my aging and life milestones, but there’s no way to know since it’s the only life I live. I think many of my qualities stayed consistent or amplified with age. There are two things though that rise to the top for changes I’ve noticed in myself since being diagnosed with MS. One is a deeper feeling of kinship, and the other is developing a lifestyle of nurturing my well-being and relationships.

Feeling Kinship with Others

I feel a kinship with others at a level that I didn’t know I lacked before my own diagnosis. When I see people with illnesses or medical devices, I see them now as someone I could be someday instead of someone separate from me with disabilities. I see their mobility devices as signs of strength rather than weakness. I’m embarrassed to admit it, but my old reaction was one of feeling a sadness and sometimes pity for them. After my MS diagnosis, I realized I was terrified of losing my mobility. I learned with time how much my identity and self-worth were tied up with my ability to be independent and be active. I also learned how much I still have to offer if I lose my ability to be mobile and independent.

MS Diagnosis Changes - Feeling KinshipI have since met quite a few people who rely on assistive devices and are not able to do all they did when they were younger. I’ve seen their illnesses lead to a progression from using a cane to walker to wheelchair. I’ve seen their gradual yet persistent lessening of muscle tone and ability to care for themselves. A few of my friends have passed away, and in their final months I’ve seen their bodies wasted to a level of frailty that seemed inconceivable to still supporting a person with clear cognition.

My internal reaction has evolved to a feeling of kinship and respect. My external reaction has grown to incorporate always asking before helping. With others, we often only know what we see or hear from them. Our assumptions of what they want or need are very often mistaken. When trying to be helpful, we often get it wrong. By moving a chair, we may be sabotaging their plan to use the chair as a means to get where they plan to be. In an effort to solve a problem we see, we aren’t aware of all of the other factors they consider in each decision they make. A denied offer to help is not rude. I see now how important it is to always respect a person’s independence, allow them to choose whether to accept assistance and honor their wishes.

Nurturing My Well-being and Relationships

The other huge change in the me since my diagnosis is what I consider when deciding when to slow down, how I spend money, what I want to do in my life and with whom I want to spend my time. I still work hard and honor my commitments, but I also consider my health needs daily. If MS symptoms are acting up, I’ll take a hard look at my obligations and see where I can shift, delegate or complete tasks differently than I might prefer. It’s a very real decision for me to consider if pushing myself to keep working or being somewhere is worth potentially leading to an MS exacerbation and disability. I used to think work needed to come before my well-being and that if I could keep going, I had to keep going. This question is a good litmus test to help me make wise decisions for my health.

With my finances, I balance planning for the future while enjoying the present. I assume there’s not going to always be time or ability later, and knowing I’m embracing living now helps me believe I will look back on my life knowing I made the best decisions for my happiness.

I consistently give myself permission to try new things and enjoy life in every phase, because tomorrow my health may not allow me to do it. It’s possible I may get fitter or feel better than I do now, but right now I may also be the healthiest and most active I’ll ever be for the remainder of my life. I’ve learned to appreciate my body at both its most slender and curviest.

I now let having fun take priority over my reluctance to appear silly. I’ll dance or sing when I might not have before. Singing karaoke would have terrified me in the past, but I pushed myself and had a lot of fun. Photographs haven’t always been flattering, but I push myself to see them as proof I am enjoying life.

And then there are the people. Struggling with accepting my chronic illness motivated me to share more with people and ask more of them. I have relationships that have grown incredibly richer for my willingness to show vulnerability and accept help. I feared depending on people or showing weakness would lead to losing relationships and being rejected. I wasn’t wrong. I did lose relationships, and it was difficult, but the bonds that developed and remain are solid and fulfilling. I’ve found that the people who are good for us need to feel needed and trusted. When we withhold portions of ourselves, we keep ourselves from experiencing how good a relationship can be. I’m less likely to hide my flaws now, and it enriches my relationships. It feels good to embrace the aspects of my being that are less than perfect and own all of me.

It’s possible that with normal aging and without chronic illness I might have changed to tend to my own needs better and feel more connected to other people. It’s also possible I might have lived a long life without ever needing to change or learn more about others. Regardless, I’m happy with these changes, and I feel they help me cope with living with MS in a way that feels satisfying and right for me.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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/ 

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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