'How Are You?' Takes on New Meaning When You Live With Chronic Pain

How are you doing?

That can seem like a trick question to anyone with chronic pain. How do you answer? I could say that my erythromelalgia (EM) is causing my toes, feet and legs to burn like an inferno. I could complain that my ankles feel like they are bound by flaming ropes. If I wanted to, I could moan about my shaking legs and aching hands. I could even accuse the questioner of not really caring how I am.

In most cases these responses would generate more pain – for my questioner and for me. To answer the dreaded question honestly and fittingly, I have learned to become keenly aware of the context.

Determining the setting can cause mental exhaustion. I have to assess the situation and ask myself some questions. Does the person honestly want to know how I am? Is this the appropriate place to get into a conversation about my health? How much information do I want to share? Do I want to listen if the person tells me how she is?

When loved ones ask, I know they care and truly want to hear about my condition. When my wife asks, she wants to know how she can best help me. When I get a text or visit from my close friends, I give them the complete answer because I know they want to empathize. I can pour out my complaints to all of them.

I am a teacher on disability, and I recently felt strong enough to attend a lunch at my school held for students with disabilities, their families and school staff. I had been on leave for almost three months, so I had not seen many of my colleagues for a while. They wanted to get caught up, and so did I. They asked me about my health, but I had to make several decisions about answering.

Due to EM I am unable to stand for very long. So when I saw the office chairs, I knew I could talk at length to the office staff. During the lunch, I found a comfortable place to sit. I assessed that it would serve as a strategic place to meet people and have some extended conversation.

Often, though, the question, “How are you,” functions little more than an entre into an unrelated conversation. When an acquaintance asks it, I know that my well-being is not a real concern. It’s just a socially-accepted way to start talking, so I rarely offer many details of how I am struggling with overwhelming pain, fatigue and depression.

Doctors have asked me this question at the start of my appointment for peripheral neuropathy and EM. In this context, the question can feel like a professional inquiry into my physical and mental health, but sometimes I sense that they use it as little more than a way to announce their presence in the exam room. “How are you” really means, “I have arrived.”

When I perceive someone asking me without an honest concern about my health, I used to get upset. I would engage in self-talk, “You do not really care how I am. You don’t know me well enough to ask me that. You do not have all day to hear about my woes.” Upon finishing my internal conversation, I would normally reply, “Fine. How are you?”

Other times, the person asking the “how are you” question really wants to tell me how they are. Recently, an acquaintance who is familiar with my condition started a conversation. She asked me the question, and I replied generally. “I’m tired, but I’m hanging in.” I did not think that was the time or place to go into all of the details. When I finished, I politely (and thoughtlessly) asked the same question, and she believed this was the time to share all of her health details.

As she when on and on, I listened as closely as I could, but my neuropathic pain interfered with my ability to listen. I kept looking for a place to sit and a way to escape. After an eternity of five minutes, I abruptly ended the conversation and left. I felt rude, but I had asked the question.

I confess that I have asked the question thoughtlessly. I have wanted to move quickly into unrelated health topics by asking how someone was. I have tuned people out when they tell me the minute details of their well-being. Likewise, I have droned on with an extended discourse of my health when someone asked me, “How are you?”

As a social convention, I have come to appreciate the question. It indicates that somewhere deep down we really care about one another. As someone living with chronic pain, I must be aware of the situation when the question arises so that I can respond appropriately. I do not want to increase my pain or inflict my pain on someone who simply wants to talk.