How do I share my wife’s story yet respect her privacy?
Going public with a Huntington's disease journey isn't always straightforward
My wife, Jill, will admit she is mercurial when it comes to our day-to-day lives. Some days, she is fine with discussions about Huntington’s disease (HD), a neurodegenerative disorder she inherited from her father, while other days, she is not. It’s hard for me to separate what I see as fact from what she feels emotionally.
My wife has Huntington’s disease. That is an indisputable fact. Jill is an open book when it comes to talking about her disease with the people in our lives. That also is a fact, for now.
As time passes, she and I know her symptoms will worsen, and whatever comes our way, I plan to love and care for her as long as I am breathing. These are unalterable facts, too.
Jill has a desire to help reframe the way we look at and talk about the disease she lives with every day. Again, another fact.
Although she has a difficult time sharing her feelings, she has agreed to openly discuss our lives and show our wounds to readers of our column. That will be a fact as long as she continues to agree to it.
But some days, spending time trying to figure out what I can and cannot share with others is exhausting — another unchangeable fact.
‘I just wanted to eat my dinner’
Here’s a recent example:
Jill and I were at a fundraising dinner at my work. I was happy when she agreed to go because she’s had a hard time leaving the house lately, a symptom of HD.
The dinner was held in a gymnasium with a live band that was very loud. So we knew there would be a lot of noise. Jill brought her noise-canceling headphones to cope.
As we headed toward our table, several people I knew stopped me to chat. I was aware that it’s not easy for Jill to understand and process what people are saying when she is overstimulated, so I tried to keep the conversations brief.
Later in the evening, while we were eating, a man walked behind her, leaned close, and said something I couldn’t hear. He was someone I’d met through work and had several conversations with, including one in which I’d shared that Jill has HD. After speaking with her, he smiled at me and walked away, probably not wanting to interrupt our meal.
After dinner, Jill got up and walked outside, which isn’t unusual behavior for someone with HD. Agitation makes her unable to sit in one place. She distances herself from stimulation and can walk off feelings of anxiety.
When she returned, I asked what was wrong. She said the man had told her she was an inspiration because she has HD, and it blindsided her. She wanted to know why a stranger was talking to her about her rare, terminal illness.
Does she not want me to share what’s going on in our lives? Does she remember the weekly column about HD I write?
The evening ended, and we talked about it on the way home. She said she doesn’t mind sharing things openly, but she is the one who decides what is shared. And just because she’s open about her HD doesn’t mean she has to be the woman with HD every second of the day.
Jill added that she doesn’t have any desire to be an inspiration to people just by living her life.
“For tonight, I just wanted to eat my dinner and enjoy the night. Is that too much to ask?” she said, her shoulders slumping.
She went to bed without further discussion, and I sat in the dark trying to figure out all the rules I should follow when sharing information about our lives. I know I’m not the perfect husband, but I do try, and I will bend over backward to make sure she never feels that way again. But I still wonder why it’s an insult to be inspirational, because she inspires me every day.
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.
About the Author
Scott
Carlos - you are an inspiration to me. Please keep doing what you are doing, reading your journey is extremely helpful for me. My wife is prodromal HD and being able to read your experiences makes a huge difference. I too am planning to be there for her as long as it takes, but it's not as easy as it seems. Sometimes I try too hard, and this upsets her. I'm not sure about your experience, but I find that I worry about it much more than she does and this can impact my ability to be there for her. I also tend to overshare now - previously I didn't tell anyone about it but now I'm probably telling too many people. Please understand that your sharing with us is greatly appreciated!
Karl Miran
This question, about what to share and with whom, and when, is just as difficult as you have portrayed in this column. I've spent years not telling old friends of my wife that she has HD, which in practice means that they come to think she is just being aloof, and all contact with that friend ceases. Now that she is into the late stage of the disease, she is more willing to let friends know, just as she is more willing to admit to herself that she has HD, so we are trying to rebuild that part of her support network, one by one.