Just because you have HD doesn’t mean HD causes everything
The truth behind what we'd thought were Huntington's disease symptoms
It reminded us that just because she has a rare, terminal illness doesn’t mean it’s the cause of every medical issue. I began to realize this after her recent annual physical, when I saw the relief in Jill’s eyes after the doctor shared her latest bloodwork results.
After she’d spoken with the doctor, I asked what she was so concerned about. She acknowledged that she’d been feeling tired “all of the time, for months.” Talking with her doctor, Jill told me, had given her a greater understanding of what was going on.
I’d noticed a shift in Jill’s energy level, but I wasn’t concerned because our schedule had been hectic during the past few months. We went on a cruise in Europe, visited family in Pennsylvania and Massachusetts, and traveled to New York several times. In addition, I was hospitalized for an infection; we had several visits from family; my 26-year-old nephew recently stayed with us for more than a month; and Jill caught something that kept her in bed for three days.
So hearing Jill was tired wasn’t all that surprising. The problem is that Jill’s concept of tired is what most people would consider high energy with a side order of espresso.
I did notice she’d been having more frequent yawns, larger bags under her eyes, and low motivation when we weren’t traveling or visiting family. But she didn’t complain, so I assumed she was experiencing the typical HD progression.
Correcting our assumptions
She explained that she slowly understood how much being tired had affected her life and that, contrary to my assumption, her current issues were all caused by her malfunctioning thyroid.
I didn’t know much about how the thyroid gland affects us, so I looked it up. This small, butterfly-shaped gland is in the front of our necks and makes hormones that control the way the body uses energy. These hormones affect nearly every organ in our bodies and control many of our most important physical functions.
Jill started tearing up as she told me she’d assumed HD had caused her fatigue. She said she’d accepted that her weariness was her “new normal,” but was “so relieved” to know she was wrong.
As a loving. caring husband, I took a big breath, paused our conversation, and asked her to repeat what she’d said.
She looked puzzled, but assumed my attention-deficit/hyperactivity disorder had caused me to miss part of what she’d said. She started the story again, but I shook my head. Again, she looked puzzled. Then, a small smile appeared on her face. She got it.
“Funny. You are hilarious,” she said, rolling her eyes. “Yes, Carlos, I was wrong.” This from Jill, who prides herself on never being wrong. “But, my love, so were you. You noticed my decline and made assumptions. You thought I was tired because HD was making me that way.”
She was right; I hadn’t pushed her to figure out what was happening.
“I understand I need to be my own advocate,” Jill said. But then she reminded me that, as her HD symptoms worsen, she needs to depend on me to notice changes in her behavior because she may not.
“That’s what being a caregiver is all about,” she said. “You’ll one day need to see changes in me so my doctors know what’s happening and can change my treatment if needed.”
Jill likes to call this sort of realization a “lightbulb moment.” Ignoring symptoms or blaming them all on HD can harm her health, she said.
For myself, I now have a deeper understanding of how easy it is to get into the habit of blaming HD for all of the things that affect her. But I promised I’d make an effort to talk to her about what I see. Hopefully, this new issue will be the last she experiences for a while, but if not, I’m ready to face them with, or for, Jill.
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.