How my gene-positive wife raises awareness of Huntington’s disease
Her unique skills help me — and others — better understand medical concepts
My wife, Jill, was diagnosed as gene-positive for Huntington’s disease (HD) in 2018, and our daughter, Alexus, was diagnosed the following year. Because HD runs in Jill’s family — multiple people on her father’s side of the family have battled it, including her dad — she’s very aware of the disease’s devastating effects. That’s why, despite being an extremely private person, she decided to share her story to help others deal with it. It’s her way of raising awareness of the rare disease.
As a result of all her experience coping with this family illness, whenever she learns something complicated or confusing about HD, she tries to explain it to me — and others — in an easy-to-understand way.
Most of the time, Jill uses great analogies. It’s an amazing ability, and I love having my own personal CliffsNotes. I first noticed this skill when she was explaining the differences between a copay and a deductible, terms I’ve never really understood.
She said, “A copay is like checking a bag before a flight. Most airlines charge you a flat rate for each checked bag. You also pay a flat rate — the copay — every time you visit the doctor. The copay is your portion of the total cost of the visit; your health insurance carrier covers the rest.”
Jill continued, “Meanwhile, reaching your deductible is like earning reward points by paying with a credit card. Your deductible is the amount you must pay out of pocket for healthcare services before insurance will begin covering your expenses. When you reach your deductible, your health plan shares in the cost of covered services. Similarly, once your credit card purchases total a certain amount, you can redeem the reward points you’ve earned.”
Having paid a fee for checked bags and earned rewards from credit card purchases, I totally understood what she said.
Jill started beaming. She was so excited to help me understand something I’d actively avoided learning because it always seemed so complicated. She looked like she’d just won the lottery. I was happy because she was happy. But I was also a little surprised by how much effort she put into teaching me about something that she’s clearly more suited to handle.
After she enjoyed her victory, I asked her why she felt the need to help me understand healthcare terms. Before I finished asking, I realized I knew the answer.
“My dear Carlos,” she said, while holding my cheeks with her hands, “I may not always be able to be in charge of such things. Because of my HD, you may need to step up and handle our health. I want to teach you all you’ll need to know in case that day ever comes. I don’t want you to wait to learn until it’s too late for me to teach you.”
I told her she was right, but I still hope that HD never takes away her personality and skills. I realize this is wishful thinking. But I can still dream that all the horrible aspects of HD will occur later rather than sooner.
In the meantime, we continue to share our story to raise awareness and help others cope — not only during Huntington’s Disease Awareness Month in May, but throughout the year. While 31 days are devoted to this annual event, our entire lives will be devoted to spreading awareness of HD’s effects.
Note: Huntington’s Disease News 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 other 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 Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.