What Do You See When You See Me?

If I were using a wheelchair, would you question why I use a handicapped placard? Perhaps some (or all) of the condemnation I now receive would diminish. Maybe the notes left on my windshield would not be written. Perchance, it might temper some of the ugly comments spoken to my face. It will not, however, quash the pervasive stereotype.

Therefore, I am caught in the constant push-pull of reality versus perception. My secondary progressive MS does not always present itself the same. Similarly, the majority of my most burdensome symptoms lie unseen. The challenge of existing with extreme pain, grueling fatigue, and perennial insomnia pale in comparison to justifying each.

I take pride in my appearance. I enjoy keeping my nails done and my hair brushed or pulled back, and wearing minimal blush and lip gloss. While not always possible, I try to keep myself well-groomed and neatly dressed. I do this as much for myself as for others. Even on Zoom calls, I will do what I can to maintain a professional appearance.

Because of this, it can be difficult for some to understand how poorly I feel. Even on my best days, I wake hours before dawn. And on that best day, I still feel the very worst pain. People other than my husband do not see much of my reality. They cannot appreciate all that I necessitate in preparing for each new day. The heating pads, ice packs, and myriad other life hacks help to minimize the pain. And they cannot possibly relate to the number of medications it takes for my body to achieve baseline functioning.

Upon bringing this up, my doctor said something interesting. She wished patients could turn themselves inside-out so that others could better understand all they endure. It’s a sad reality only a few understand.

I begrudge none of this. I am grateful for my full life despite this disease. I am thankful I can bring awareness and light to topics many of us share. What I dislike is the thought of me being an ordinary assumption based on a generality. Because if you knew me, you would know that the sum of my parts is anything but ordinary.

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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.