Living within a body that has betrayed you for six decades is a conflict and crisis that brews within—a turmoil seldom acknowledged in the medical community. This internal warfare between the spiritual being I am and the non-stop suffering endured is a harsh reality. In over 30 years since my diagnosis, only one doctor has ever asked, “How are you doing phychologically?” Most of the time, I function at a forced level, verbalizing that I’m fine, even though I’m perpetuating a conflicting message, lying about the reality I live through daily.
This lived crisis is often fought within the confines of my own spirit. I am blessed that my prayers help tamp down the constant suffering this disease causes. My spiritual life has been a saving grace, but the fight for a better self never ceases. My faith energizes my spirit and supersedes the relentless suffering. Yet, make no mistake, living with a chronic illness like Multiple Sclerosis, especially for so many decades, grants one the right to wear an emblazoned, neon “S” on their chest and declare themselves Superwoman. I am all that and more, proving it every day. Still, I am only human, and I am woman, hear me roar!
Multiple Sclerosis is a relentless adversary. It strips away independence and mobility, leaving one to grapple with a sense of betrayal by their own body. For over six decades, I have endured this silent warfare, a conflict that remains largely overlooked by the medical community. The physical pain and limitations are evident, but the emotional and spiritual battles are rarely acknowledged.
When I was diagnosed over 30 years ago, I never imagined the profound impact it would have on every aspect of my life and it would be so extreme. The medical appointments, treatments, and therapies, etc, became a routine, but the human element—the simple act of asking, “How are you doing?”—was often missing. Only one doctor ever posed that question to me, and it highlighted a glaring gap in the approach to chronic illness care.
Living with MS means constantly functioning at a forced level to keep fightingfor but needi g to redefine "normal". I’ve mastered the art of saying, “I’m fine,” when the truth is far from it too often. This facade is a coping mechanism, a way to shield myself and others from the harsh reality I endure. It’s a conflict between presenting a brave front and acknowledging the pain that is ever-present.
Yet, amid this struggle, my spiritual life has been my anchor. Prayer and faith have provided a refuge, a source of strength to counter the incessant suffering. My relationship with God energizes my spirit, lifting me above the physical pain and limitations. It’s a daily battle, but one where my spirit often emerges victorious, fueled by a sense of faith to pull me away from the darkness of MS.
However, don’t mistake my faith and how I present myself as an absence of struggle. Chronic illness is a relentless adversary, and living with it for decades demands an extraordinary level of strength. It’s a strength that goes beyond the physical, delving into the emotional and spiritual realms. I envision myself with a neon “S” emblazoned on my chest, not just as a symbol of survival, but of triumph over adversity.
In the face of MS, I have become Superwoman. I prove it every day by persevering, by pushing through the pain, by maintaining my faith and uplifted spirit. But even Superwoman has her moments of vulnerability. I am human, after all. I am a woman who has faced unimaginable challenges and continues to roar in defiance of them.
The journey with Multiple Sclerosis is one of constant evolution. It has shown me how much more I was to endure when I was already stretched beyond where life was already unfair. It stretching me as it stole my mobility 17 years ago and keeps forcing how resilient my stretch and bounce back I might have left. The value of inner strength, the importance of a spiritual anchor, and the power of resilience is all tested in such extreme ways, sometimes it hurts to breathe. Despite the physical limitations, my spirit remains unbroken. My faith is a testament to the possibility of finding strength and hope in the darkest of times.
So, to anyone living with a chronic illness, know that your struggles, your pain, and your triumphs are valid. You, too, have the right to wear that neon “S” on your chest and declare yourself a warrior. We must keep fighting our battles, roaring our defiance, and seeking solace while finding ways to reinforce our inner strength. I am woman, hear me roar! }...▪︎
Icerlene Jones-Wiley
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