I have previously discussed in this space my wife Jill’s dislike of visiting the doctor. I use the word “dislike,” but she would use the word “hate.”
Since Jill was diagnosed with Huntington’s disease in 2018, I try to go with her to appointments when she asks me to. I want to be supportive, and when she starts to decline, I’ll help with the conversations with doctors regarding her care.
Recently, she started getting a monthly injection for chronic hives. Every time she gets the injection, she stays at the doctor’s office an extra hour for observation. It’s precautionary, as the medication has caused an anaphylactic reaction in some patients. Although Jill dislikes going to the doctor because of her sensory issues (she can’t stand strangers touching her), waiting gets her equally worked up.
Having to wait, either in the waiting room or the patient room, bothers her. She particularly doesn’t like the waiting room. As she puts it, “I don’t like it because of the group of people you seem to always find sitting there. You have the loud phone talker. You have the family that seems to argue about everything. And you have the dad that doesn’t want to tell his child to stop crying and screaming, so he lets them run around the room while he looks at his phone.”
Normally, these things wouldn’t annoy her too much in other settings, but when you add the fact that she has white coat syndrome, it’s an explosive combination.
If she’s lucky, she’ll only have to stay in the waiting room about 15 minutes, but that usually isn’t the case. During a recent appointment, she had to wait about an hour.
When she’s called in to see the doctor, she’ll joke that it’s like winning the lottery. (Seriously, she is that happy.) But then another round of waiting starts with the nurse, who comes before the doctor.
I share all of this to indicate how much I empathize with her, but also to point out that I understand how she feels. As someone with a rare disease, she has no control over her health. It will continue to deteriorate, and no matter how much she exercises, or whether she eats a healthy diet or not, she won’t be able to stop neurodegenerative decline.
Like many, Jill is impatient, but I think another issue is at work here. Although she is supposed to be on time for doctors’ appointments, her lack of control over when the doctor actually sees her forces her to realize how little control she has over her health.
Part of my journey as her caregiver, and the biggest lesson I’ve learned from waiting with her, is not to focus on the lack of control I have over her decline in health, but rather on pouring my energy into something positive, such as learning to become more patient, and remaining by her side, so that as she processes her emotions — both positive and negative — she’ll understand that she is not alone.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?