The Emotional Cost of Disability

My migraines were so bad during the year I lived in Boston that I didn't leave the apartment for weeks on end and spent consecutive days in bed, thrilled if I was able to shower once a week. My husband was working long hours then coming home to care for me, drive me to appointments, and manage all the household chores, cooking and cleaning.

Invisible IllnessWe were desperate for help and knew no one in town we could ask to lighten the burden. A friend researched home health aides and my husband called around for details and price estimates. He settled on one company he liked and asked me to make a list of tasks we needed assistance with. I didn't do it. Even after he brainstormed a list and asked me to review it, I wouldn't give my input. I wanted to reduce his load, but the price of hiring a home health aide was more than I could pay. The hourly rate was high but not unmanageable (especially because we weren't spending money on restaurants, travel, or any other entertainment) -- the high price was the emotional cost of admitting that I was housebound.

Two years after we discussed hiring someone to help us out, my husband and I have moved to Phoenix, my health has improved somewhat, and I can look back at that time as The Worst Year of My Life. I am still grappling with a higher level of disability than I would like, but I'm able to admit to it now. I did so last week when I asked my headache specialist to sign the form to request a disabled parking permit from the state.

The idea of using a disabled parking permit challenges my view of myself as a fundamentally healthy 35-year-old. But I remember going out to get groceries in the searing heat of last summer: Searching for a tree-shaded parking place, putting shade screens in the front window and cracking all the passenger windows so the heat won't build up. Seeing the sheen of heat covering the parking lot. Walking across the black asphalt, soft with heat, while the sun radiates maximum UV rays from overhead. Arriving in the store and basking in the cool air, which chilled my sweat-soaked skin. Even though it only takes a few minutes, this exposure to the asphalt oven that is Phoenix in summer almost always triggers a migraine. I can't subject myself to that for another summer when there's a solution that will allow me to park close to the store's entrance -- if only I will swallow my pride.

To the rest of the world, I look perfectly healthy. To myself, I do not feel like someone who is sick enough to require a disabled parking permit. And yet I do. My heart quivers a bit when I open my eyes wide to this bald truth. But perhaps paying the emotional cost of admitting my disability will allow me to work around this fickle illness so that it is ultimately less disabling.

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