Mom LifeParenting

Parenting With an Invisible Disability

I look "fine" and regularly take my son out on outings all around Los Angeles. #invisibledisability

“It’s lucky we have that pass,” my son said from the backseat.

I bit my lip, because I wasn’t entirely sure how to respond to Ryan’s innocent comment, and I didn’t want to become overly emotional.

I knew what my son was trying to say. Ryan meant that it was fortunate we had a pass that allowed us to find a parking space in the crowded library parking lot.

But it isn’t just a pass. The pass my ten-year-old referred to is a disabled parking placard.   

I look “fine” and regularly take my son out on outings all around Los Angeles.

Five years ago, I retired from my teaching career due to a disability (Undifferentiated Connective Tissue Disease). But it wasn’t until last year that I reluctantly filled out the form for the placard. I wasn’t convinced I needed one. It was everyone else — my husband, my mother, my friends — who told me I not only needed the placard, I deserved one.

When I park my car and hang the blue placard from my rearview mirror, it is a very visible symbol of my invisible disability. Most of my neighbors, for instance, don’t know I deal with a chronic medical condition and daily pain. They don’t know about my regular doctor’s appointments and my bottles of medications. They know me as “Wendy” (or simply “Ryan’s mom”), the one who is out there playing handball, riding her bike, gardening. Doing all the things that make me look like I’m okay.

When the placard first arrived in the mail, I kept it in the house for over a week. I couldn’t accept that it belonged to me. As a young girl, I believed people had to look handicapped to be handicapped. People like my grandma. A woman who relied on a wheelchair. A woman who couldn’t drive herself. A woman who was immobilized by the effects of rheumatoid arthritis, multiple strokes, and breast cancer.

You never know what other people are going through. Wendy looks fine on the outside, but her invisible disability causes her a great deal of pain. After years of saying she didn't need it, she finally got something to make her life easier, but has become a symbol of her illness. #invisibledisability #teachablemoment

When Ryan was much younger, and I was still teaching, he had asked me what the blue parking spaces were for. I told him then that it was for people who needed to park closer to an entrance because some part of their body had a harder time moving.

I now fit my own definition. Though even with the placard in the glove compartment, I hesitate to use it. I admit, it does come in handy and saves me money when parking at meters. But in terms of handicapped parking spots, I try not to use them, always thinking that there must be someone else who surely deserves it more than I do.

During our recent spring break trip, I was trying to manage my pain while dealing with some high intensity walking situations. (My disease causes fatigue, weakness, and pain in my legs). So on the day we went to the San Diego Zoo, I did park in a handicapped spot, closer to the entrance. But once inside, I walked the Zoo from one end to the other. It wasn’t an easy walk for my husband or son, but for me, it was completely debilitating. To the point that I began walking with a singular mission in mind — find a bench. And once on the bench, I cried. I cried in pain. I cried in fear, knowing I still had much more of the Zoo to explore, and I cried in despair for the ways my body has changed.

My husband and son tried to comfort me. Ryan offered me water (a teacher’s go-to any time a child complains of a vague hurt). And after a short time, I got up and kept going. I kept walking. Seemingly looking fine.

Any other Zoo visitors may have seen me that day and thought I was just slow-moving. Out-of-shape or lazy, even. But there’s always more to the story.

The teacher in me recognizes that by living with my autoimmune disease, an invisible disability, I am teaching my son life-long lessons. That there is no specific way for a handicapped person to look. Or act. That people look many different ways and those ways don’t always match our preconceived ideas of how a person should look. That you can’t judge a person by how they look on the outside. That appearances don’t tell the whole story. That there’s often much more going on than what is visible on the surface. 

It’s not lucky that we have a placard. It was lucky we found a parking spot. But I’d trade that disabled parking placard any day to live without this disease.

MOMSLA IS YOUR SOURCE FOR THINGS TO DO

IN LOS ANGELES WITH KIDS.

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