Seeing Isn’t Always Believing: The Challenges of Driving With an Invisible Illness

My youngest son, Caeleb, is embarking on a new adventure and studying for his driver’s test. Once he earns his permit, we’ll take him to the church parking lot for practice.

Caeleb is thrilled at the thought of driving to school and band rehearsals. He is growing up and realizing that the world will expand with possibilities when he earns the privilege of driving a car.

I am excited to see my son on the cusp of figuring out who he is and what he wants to do in life, yet I immediately think about how hemophilia plays a part in his next chapter.

I sat with Caeleb and clarified that when he gets behind the wheel, there is one nonnegotiable: He must wear his medical emblem.

I try my best to keep my worrying to a minimum, but the one thing that keeps me awake at night is thinking about the accidents that can happen while driving. I fear that my sons will not wear their medical identification, get in a wreck, and no one at the scene will be aware of their bleeding disorder. Wearing an emblem is critical for people with hemophilia.

Another thought came to my mind while helping Caeleb with his driving journey. When he lost mobility for over a year, he needed a disabled parking placard. Parking in a designated spot closer to the store with extra room to maneuver helped tremendously when dealing with a wheelchair and walker. It has been several years since we used the placard regularly, but Caeleb’s pain still prevents him from walking long distances at times.

At Caeleb’s recent six-month checkup at the hemophilia treatment center (HTC), my husband asked the doctor for a new letter to renew the placard. I realized that even if Caeleb is driving himself to school, there will be days when he needs extra time to get inside the building. Likewise, if he is having a pain flare-up, needs to use a walker, or cannot move as quickly, a placard can be helpful.

Some may think it’s not necessary for a person with hemophilia to use a disabled parking placard. I agree. But when extensive damage to joints is a reality, the simple act of walking into a store is sometimes painful, and that struggle is not always visible.

An invisible medical condition can be difficult to handle. Of course, a parent or caregiver has no obligation to explain a loved one’s illness. But there are times I wish I could, simply so those who look on from a distance may gain a new perspective.

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Seeing is not always believing. There are things we cannot see on the outside that affect people in ways we cannot comprehend.

A person walking with chronic pain may never cringe or slow down. A woman with diabetes may wear a pump hidden under her clothes and teach students all day. A boy with hemophilia who has endured horrific joint pain and damage may walk to class with a slight limp.

Before passing judgment, remember that every person has a story, and maybe even a struggle, that we may never know.

Next time I see what looks like a healthy person parking in an accessible spot, I will stop for a moment, send a blessing up to the heavens for them, and give thanks that my son only occasionally needs that spot.

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Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.