Almost every characteristic of multiple sclerosis differs for each of us who has the disease. While we share commonalities inherent to multiple sclerosis that make us similar to one another, much about the way our disease manifests is unique. This is why MS is sometimes referred to as the “snowflake disease.”
Receiving the same diagnosis does not mean having the exact same disease course. Our personal experiences differ considerably. I find it helpful to use the snowflake analogy when people compare me with someone else who has MS. Other than our diagnosis, our disease is as individualized as our personalities. This is why certain medications are effective for some, but not for others. Or why symptomatology in my secondary progressive MS (SPMS) looks different than that of others with SPMS.
Whether regarding MS or life in general, comparisons and assumptions can be damaging. Each of us deserves respect and kindness. Our experiences should not depend on external validation. Nor should we feel ashamed if they lie outside the norms we are familiar with. Living with our symptoms, side effects, and degrees of disability is enough.
The manner in which MS presents itself depends on the location and severity of lesions. My SPMS causes dysphasia, dysarthria, and a loss of coordination. Most of my lesions are on my spinal cord, and specifically, my cervical spine.
When I was first diagnosed with relapsing-remitting MS, the lesions on my spinal cord were not as extensive. Therefore, my symptoms were different. I also have lesions on my brain and experience symptoms accordingly. My cognition and memory are both affected. But that doesn’t mean my disease is better or worse than someone else’s. It just means that we are different.
Some people have told me I’m lucky not to be in a wheelchair. I readily acknowledge that I am fortunate not to need the aid of a chair today. But I am also quick to suggest that my constant pain and difficulty swallowing and speaking are unenviable facets of an unenviable disease.
There is no quid pro quo. We have multiple sclerosis, and we all suffer and hurt. And we all want a cure. Everyone I know who has MS would be joyful to alleviate someone else’s suffering just as much as their own. We have no need for comparisons when each of us is trying to live our best life. We strive only to be the best version of ourselves.
I compare myself only to the person I was yesterday. And in doing so, I allow for grace and understanding.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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