I Am Beautifully Rare Despite SPMS

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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neuropathy, positivity, husband, laughter, connecting, i am fine, self-care and MS, finding myself

I have secondary progressive multiple sclerosis and I am rare.

In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease.

I have been asked if multiple sclerosis qualifies as a rare disease. It does if you have MS. I became rare on Nov. 6, 2010.

Rare is in the eye of the beholder. It is also something to behold. In and of itself, it is synonymized with unique, extraordinary, and priceless. Preceding disease, it is overtaken by syntax. Rare becomes unknown, elusive, and guarded. The simple addition or exclusion of a word can shift perception. Yet no shift of words can alter my reality.

For that I am grateful.

My diagnosis with MS was an invitation. A summons to witness my own metamorphosis. Growth through painful trials is indeed rare. The cocoon of the frightened girl gave way to a woman ready to fight. Each trial serves to create a better me. A more grateful person. A stronger advocate. The friction has allowed me the clarity I would have otherwise never acquired. And much like a diamond, I shine.

Yet much like diamonds, the pressure can be immense. The stigma, disability, dependence, loss of income and intimacy, lack of insurance coverage, and litany of painful side effects are constant. They do not take a day off. They do not disappear with medication, meditation, or mantras. At times, they get worse. Sometimes, a great deal worse. From 72 hours of spasticity-induced insomnia to the inability to feel half of my face.

This makes me rare.

Rarer yet is my continued faith in God and my belief that life holds limitless possibilities. Rare is my continued desire to better my life and the lives of others with MS. Rare is the choice to wake up and decide to rise and thrive. Rare is my ability to cry, dry my tears, then give even the most difficult days the best I have.

Lest you think I am an anomaly, think again. I am in good company. I have been lifted by colleagues with rare diseases. Each individual continues to touch, move, and inspire me. They do so by the way they choose to live, in their shared work ethic and desire to help others in their respective disease communities. I am blessed to now call them my friends.

Yes, I am rare. But let us get one thing straight: I am rare despite MS, not because of it.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Christine Lynch avatar

Christine Lynch

Beautifully written. Thank you for inspiring us all.

Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Thank you so much for your kindness



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