Telehealth for mental healthcare has helped my wife cope with HD

When my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she had been feeling anxious and depressed. It was one of the reasons she decided to go through with genetic testing, as these are common symptoms that act as warning signs for gene-positive HD patients. Those are usually followed by the manifestation of physical symptoms such as chorea, or involuntary, brief, and abrupt muscle movements.

When Jill discovered, as we had feared, that she was indeed gene-positive for HD, we discussed adding talk therapy to her treatment plan. At the time, Jill was employed at a highly stressful job that required her to talk to people frequently and to work long hours. She said that adding talk therapy would exhaust her too much.

Jill also has white coat syndrome, so going to talk to someone in an office after a long day would not be productive for her.

I didn’t push the topic, because if Jill decides something won’t be helpful, it won’t be. She sometimes refers to herself as stubborn, but I like to think of it as her having strong opinions and convictions. It’s one of the many reasons I love her.

If she wasn’t ready to go to talk therapy, I supported her. She promised she would go if she felt she needed it or if I told her she needed to go. She understood that HD can mask things from the person who has it, and it was important to her that her actions didn’t negatively affect our family. She understood that she might not realize that symptoms were getting worse, so she trusted me enough to tell her.

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What changed her mind?

A few years ago, Jill decided it was time. She was ready to talk to someone professionally. I asked her what had changed her mind. She said telehealth visits had made the decision much easier.

“I won’t get lost. I won’t become anxious about getting there on time. I won’t worry about how I will get there,” she said. “I don’t have to sit in a room I’m not comfortable in. It doesn’t take up most of my day thinking about it, and most importantly, I get to wear jammies if I want.”

I smiled and was happy that something that would have been so difficult for her was made easier by healthcare professionals simply allowing her to be comfortable on her own terms.

“This is the first time I feel empowered to talk to someone instead of dreading it,” she said.

Jill wishes everyone could access telehealth and mental health counseling. Since she started her sessions, she has been open and honest with our friends and family about going. Because she is so private, it surprised me that she would talk so openly about the subject.

I share all of this because she understands the stigma of going to a therapist. She realizes that some people think that talking with someone about their problems and fears makes them appear weak or less than. She wishes to dispel those ideas. We share our story to help others understand that mental health is not something we should hide or be embarrassed by.

Jill wants people to understand that taking care of yourself in a healthy way makes you tough. It makes you smart. It can help you become a problem solver and empower you to be in charge of your life. For Jill, the most important aspect of taking care of herself is that it makes her a good example for the other people in our lives.

She suggests that we all talk about mental health openly with others, even when it’s hard. She feels that we can all be role models for others who could be going through something similar. By sharing this, she hopes it will be a reminder that no one is alone in dealing with mental health issues.

If anyone reading this realizes they need to get mental health counseling, it’s important to be careful about self-diagnosing. Any concerns about any serious mental health issue — or possibly taking medication to treat it — should be discussed with a medical professional.

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.