When Hemophilia and Neurodiversity Converge

Shellye Horowitz avatar

by Shellye Horowitz |

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I am not neurotypical. My thoughts, perception, and speech can be different than others. It is subtle, but there.

For example, if someone tells me something, I take their word literally — and I mean literally. If someone tells me they poked themselves 30 times when infusing factor products, I believe it actually happened 30 times.

The term neurodiversity empowers and embraces the diversity of neurological realities. It can include differences such as autism, dyslexia, ADHD, and many other diagnoses or differences thought to be neurodivergent. Yet this term is meant to embrace the uniqueness and does not see it as a disability. It’s about removing the stigma.

Seeking treatment

The neurodiversity I bring into my daily life has sometimes affected my ability to obtain care for hemophilia. Sometimes it takes longer to find providers I connect with. Recently, I had a specialist consultation that was not ideal. The doctor treated me like I was 6

For example, I was there to be evaluated for a cortisone shot. The doctor told me they had “put some special medicine” in the joint where it hurt to help lessen the pain. Darn it, I know how cortisone works, and please, let’s use its name. Condescending explanations aren’t helpful.

Having a high IQ means my mind never stops. Science is amazing and provides answers and proof. When I’m not believed by doctors, I bury them in data.

When a doctor is insensitive to me and my communication style, it’s hard to communicate my medical issues.

Speaking with a neurodiverse patient may be challenging at first, and there may be many questions and opinions. Yet, we are fiercely loyal and good at showing appreciation. We also take recommendations to heart and often follow them perfectly.

Networking and making friends

I struggle to make friends. Social situations are sometimes awkward for me. I’ve never been drunk or high, and I prefer to be far away from people who are drinking, as I don’t like their unpredictable behavior when they’re tipsy or drunk.

This has cost me networking opportunities, because I hate going to bars with groups at conferences. Find me in the gym, or meet me for coffee or a walk one on one for deep conversation.

Obsessing over new hobbies or causes, such as hemophilia advocacy, is fun for me, but not always for those around me. I repeat myself when I talk. I often share an abundance of details, sometimes too many, which annoys people. I honestly can’t help myself sometimes.

When I was in grade school, I struggled to make friends. The combination of hemophilia (I sucked at sports) and my social awkwardness were at play. People would sometimes “steal” my friends away from me. Burying myself in a book, I stopped attempting to lure these friends back. It wasn’t a battle I could win.

When struggling with some medical professionals like I used to struggle with friends, I find that I sometimes give up quickly on those I perceive as not listening. I attempt to educate them, but eventually I shut down and move on. 

However, I do not like to offend people. A lifetime of battling loneliness has me fearful to rock the boat too hard, as I don’t want to alienate those who are kind and part of my life.

Neurodiversity and advocacy

Ironically, neurodiversity allows me to have an entirely different strength and perspective when advocating. I am much better at expressing myself in writing, as illustrated by this column. Challenging people in the name of critical education excites me. I embrace the value that comes with pushing people so that they think. A good debate is healthy and educational.

Teaching others to advocate for appropriate care is a passion of mine. Sometimes I am better at teaching it than implementing it in my own life!

Writing to my doctors has been helpful because I know I communicate better that way. I do the same with friends and family at times. It is OK that I am awkward, passionate, and obsessed. Balance this with immense loyalty, compassion, and support, and I am good to have around!

When I look around, I think there is a lot more neurodiversity in the world than we realize. In fact, maybe the real minority is those who are “normal” or “neurotypical.” My unique mind helps me be a strong hemophilia advocate. Maybe yours does, too. If so, embrace your uniqueness, and let yourself shout out the message you need heard. You have so much to contribute.

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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.

Comments

Tracey stone avatar

Tracey stone

I found this article spot on thank you Shellye you have perfectly summed up my son, whom I continue to advocate for

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Shellye Horowitz avatar

Shellye Horowitz

Thanks, Tracey! He is fortunate to have you as his advocate.

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