Invisibility Is Not the Easy Way

Invisibility Is Not the Easy Way

I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?” I immediately answered, “Yes, it would be cool.” But sometimes being “invisible” is not beneficial.

In the bleeding disorder community, there was a time when having hemophilia was an obvious, physical limitation for many. Damaged joints caused people to limp and often rely on walkers, crutches, and wheelchairs. Joints that bled numerous times would never be the same in function or appearance. It was obvious that something inhibited the person from being mobile. There was never doubt that the individual had a physical impairment.

Fast forward to 2018, and many with hemophilia are living lives the older generations could only dream of. Factor products are much safer and more effective, which leads to less bleeding and joint damage. Many with hemophilia play basketball and soccer with ease (and continued precaution). And the “hemo swagger” of the past? Many never experience it. Yes, this is fantastic. However, when our community fights for insurance coverage, choice of factor products, funding for hemophilia treatment centers, and even 504 plans in our schools, the unaffected world does not see an impairment.

The uneducated world sees a little child playing and running with ease. What they do not see is the port in their chest or the needle marks at the sites of regular infusions. They do not see how a child must learn to accept needle pokes as a way of life. And they surely do not understand how a 12-year-old boy can have arthritis.

My 12-year-old has arthritis and the “hemo swagger,” neither of which are always easily seen by those who do not know his hemophilia experience. When he suffered from constant bleeds and could still walk, we would park in an accessible spot at the store. The stares and comments from onlookers were horrific. They had no idea that my son suffered more than they probably would in a lifetime.

We no longer need the handicapped placard, but there are hundreds of thousands of people who do need that placard. On the outside, they are seen as physically able, but before you judge them, stop for a moment and consider that they may be fighting a battle you could never comprehend.

Invisible Disabilities Week is Oct. 14-20. Rather than judging someone as they leave their car in the accessible parking spot, take a moment to give thanks for your health. You may need that spot one day, and you will hope that those walking past will not be filled with judgment, but with kindness.

For more information on events, programs, and materials about invisible illnesses, visit the Invisible Disabilities Association.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (12) in Farwell, Texas. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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