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Why No One Can See My Hardest Days With Cerebral Palsy

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This may come as a shock, but virtually no one can see my “bad days” with cerebral palsy. They’re easy for me to hide, and I take advantage of that ease by concealing them whenever possible.

Many people expect challenging days with cerebral palsy to be somewhat visible — a more pronounced limp, an increased use of mobility aids, a casual remark about being in pain. But while some people’s “struggle days” are apparent, my challenges seem to lurk below the surface, completely invisible to all but the most perceptive observers.

Some days, the cold bites through my already-stuff muscles, making them even harder to move. In those moments, the differences between the affected and unaffected sides of my body seem glaringly obvious — my chilly right leg strides through the cold climate while my freezing left leg seems to slog through the harsh weather. But even when winter weather forces my lilting gait to become a pronounced limp, I’m typically the only one who notices because my cerebral palsy is so mild.

On my most difficult days, I wake up with pain wracking my entire left leg. The pain remains sharp for hours, and no amount of quick fixes seem to solve it. I’ll take a scalding shower, turn on a heated blanket, or warm up a heat pack to try to relieve the pain. But unless my pain works its way down to my foot, when I experience pain in public, no one seems to notice. When the pain in my hip, thigh or knee wears me down, I feel physically and emotionally drained until the sensation dulls to a tired ache. But all casual observers tend to see when they look at me is a young, seemingly pain-free woman picking out apples at the grocery store.

A substantial amount of people believe that the visible symptoms of cerebral palsy hurt those who have it, but the reality is that pain can even manifest in less obvious cases, which makes the struggles inherent in living with CP even more invisible.  Up to 84 percent of adults with cerebral palsy experience pain from the wear and tear cerebral palsy places on their bodies, but it doesn’t just apply to those with severe cerebral palsy or moderate cerebral palsy. Even adults with mild cerebral palsy can experience significant pain, but the less obvious their symptoms are, the less likely it is that others will believe they’re struggling.

My experience with pain is further complicated by the fact that often, I don’t want people to believe I’m struggling. I constantly fear that if I verbalize my pain, others will treat me as fragile or think of me as a “person with cerebral palsy” instead of just a person. Although my friends and loved ones have never given me any indication that they see my disability first, I invariably see my cerebral palsy in everything I do and unfairly assume that others will too.

The moment any perceptive person chips away at my veneer of a painless, comfortable life, I feel simultaneously highly uncomfortable and deeply relieved. I feel incredibly vulnerable, like the mask I hide behind is completely laid bare. But the more I open up about my pain, and the more others understand my symptoms, the less challenging my most difficult days with cerebral palsy are. No one can see my hardest days with cerebral palsy because I conceal my symptoms from view — but I’ve discovered I no longer need to.

Getty image by PhotoDJO.

Originally published: March 28, 2021
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