When Asking "How Are You?" Does More Harm Than Good
Despite having lived with Keegan, my husband with AS, for over 8 years, I'm still learning a lot about how to communicate. I'm always one for checking in frequently throughout the day. I use the same question. "How are you?" I want to know what his status is like the weather report. What's the chance of a flare-up? Any fatigue? Acute pain? Deep pain? Will it be a good AS day or a bad AS day? But as Keegan and I were chatting tonight, I learned that asking this question specifically causes more harm than good.
The good, the bad, and the ugly
Keegan understands this all comes from the right place. From my end, it's a way to show I want to always be mindful and aware of how he's feeling. And having lived with him for so long, I know his symptoms change throughout the day. Mornings are rough, things get better, and afternoons are rough again. Plus, it's a question that he wishes more people would ask. It's a great question to show one cares, but maybe not the best as his caregiver and someone who sees him every day.
As we discussed how we communicate about his AS I found out that asking "How are you?" puts work on Keegan rather than relieving him of work. Responses to this question are a summary of moments. He has to think back through the day and compare it to the last time that I asked him the question. In my mind, I'm thinking, "Wow! I'm so attentive and thoughtful to ask him how he's feeling." In his mind, he's thinking, "Oh gosh, there's been so much going on. My fatigue, my pain, feeling overwhelmed from the day so far. What do I say to Auldyn?" We're not setting ourselves up to have a productive conversation.
It also means reliving tough moments
The path to hell is paved with good intentions, much like this one. The other piece that surprised me to hear from Keegan is that the question, "How are you?" can surface feelings and thoughts he's been trying to separate from. Maybe it's been a really rough day leading to some tough feelings. Maybe it reminds him that he's absolutely exhausted and hasn't gotten a break in 8 hours from our toddler.
I thought about it from my experiences lately being 8 months pregnant. People ask me all the time, "How are you doing?" And I don't know how to answer. Is it appropriate to tell someone, "My ribs hurt so bad and I'm scared to go through childbirth again"? It brings up emotions and thoughts I'm still processing.
The solution? Ask specific questions
"What are better questions to ask you if I want to know how you're feeling?" Keegan thought about this for a while and told me that specific questions feel much better. This way, as his caregiver, I have specific data points that I can connect and make a conclusion. Keegan doesn't have to make the conclusion anymore! Sometimes I ask things like, "Scale of 1-10, how's your pain?" And if he tells me it's high, I'll follow up with, "Is there anything I can do to give you some rest?"
Here goes changing my rhetoric! I'm curious to see how it helps our communication. Have any of you in the community found better questions than just "How are you?"
Other than back pain and fatigue, what is the most common symptom that AS patients experience?