Trying to pass as “normal” can be exhausting

by Alisha McMillen

"Trying to pass as 'normal' can be exhausting" - by Alisha McMillen. Quotation: "The thing I recently realized is that by missing those activities, and the walks and car rides that get my family there, I’m also missing out on family conversation and bonding time. I miss stories that my daughters tell their dad. I miss funny jokes. When I’m sitting on the bench and see them walking away laughing, it hurts me inside. But I don’t want them to stop living their happy lives because of my health issues."

Walking through a little town or in an airport, no one would likely know I had a disability. I debated on whether to even share this story, because I don’t obviously seem disabled, and many wouldn’t guess that I am. But I have psoriatic arthritis and when it flares, my joints ache so much I can barely move. I also suffer from chronic migraines and asthma, which pile on top of the joint pain.

These conditions, though chronic, aren’t always acknowledged as disabilities by the public, possibly because they don’t outwardly look like a disability. But psoriatic arthritis falls under the classification of immune system impairments of the Disability Evaluation Under Social Security, so maybe that perception will change.

When I hurt, most of my pain is in both hips, my right knee, my left ankle, and my right hand. It hits both sides of my body from top to bottom. And when I get really worn out, my back even starts aching. I must always be careful and thoughtful of how much strain I put on these joints.

Luckily, I have the best, and most patient, family in the world. My husband and I are in our early 50s with twin 19-year-old daughters. My family will drop me at the door when we go out. They know it’s sometimes hard for me to make it to and from the car.  They help carry my bags to take the pressure off my joints, and they wait for me to catch up when I fall behind.

As understanding as my family is, I feel bad for holding them up. They’re three non-disabled people who want to live life without having to stop every ten minutes to check on mom. Another challenge — I need recovery time. When we travel, or even have an eventful day, I usually need a day or two to recover.

In early fall, my daughters headed off to their sophomore years at different colleges. And, of course, mom and dad helped them move in. Our move-ins looked different from most of the other “normal” families moving in their kids.

I admit that I always envy the strong moms, lugging boxes and furniture pieces up a flight of stairs to get their kid moved in or doing other things, while I station myself in the room with the job of unpacking and organizing.

Recently, we visited my daughter for Family Weekend at her small, private school. There was beautiful weather and the entire quad was filled with dozens of tailgate tents and students with their families, all standing around chatting and getting to know one another. Seating was limited and not sufficient for those of us who find it difficult to stand for long periods. I was able to find a bench, but it was not close to where the rest of my family was enjoying their time with other families. I tried not to feel excluded, but it was difficult. My daughters and husband had to walk a fairly long distance to pick up the car, while I sat alone on a bench waiting for them. Again.

It is embarrassing and exhausting to have to keep declining or making the decision to remove myself from situations. And I miss out on all kinds of fun activities, including family trips. When my family wants to walk on the beach, or go on an easy (to them) hike in the mountains, I must decline. When my family, all of us huge baseball fans, wants to go to a game, I must decline. I sit and watch the game at home alone, texting my family when exciting plays are made.

The thing I recently realized is that by missing those activities, and the walks and car rides that get my family there, I’m also missing out on family conversation and bonding time. I miss stories that my daughters tell their dad. I miss funny jokes. When I’m sitting on the bench and see them walking away laughing, it hurts me inside. But I don’t want them to stop living their happy lives because of my health issues.

I keep trying for what seems like normalcy. I just want to be considered “normal,” for my family and for my friends, meaning that I want to participate in life, not sit on the sidelines watching it happen. It’s hard not to let depression slip in, under these circumstances too, adding to my “issues.”

Thankfully, one daughter is at a brand-new apartment at her college in the heart of a big city. Her apartment building is designed well for people with disabilities, with elevators and ramps (though the parking situation could be more accommodating). The apartment management hired moving companies to bring all boxes and other items upstairs for us. We just met the movers and told them where to unload in the apartment; we didn’t carry anything up ourselves.

My other daughter, however, goes to a small, pretty college built on rolling hills, beautiful but not great for people with disabilities. And the buildings are older, without elevators, though some ramps into buildings have been installed. Once inside, students climbing up or down behind me on the narrow stairs become impatient.

I try to remind myself, those strong moms helping their kids move in and my strong, healthy friends? I guarantee many of them have their own “issues” they’re fighting through, just as I am, even though they may not appear to need the same accommodations as I do.

The adage is popular because it’s true: Don’t judge a book by its cover. You never really know what people are going through. And just because someone doesn’t look like they are disabled, it doesn’t mean they’re not fighting a health battle with every fiber of their being.

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