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The Powerful Change I Made When Responding to 'How Are You'

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Deep inside, I know I am not the cluster of symptoms that seems determined to define me. I realized somewhere along the line with my rare disease that I was beginning to become nothing more than my latest set of symptoms. My life began to have no meaning because all I seemed to do was go from trying to find help for one symptom to another.

When you have an incurable rare disease with no available treatment, you often find your only hope is to try and treat symptoms. My head hurts. I am cold. I am hot. I am tired. I am sleepy. I am nauseated. I am in pain. All these statements starting with “I am” are followed by a symptom. I wanted to change this.

Over time, I’ve realized all those “I am” statements began to define me. People ask me how I am and I answer with “I am” plus a symptom. For instance, “I am in pain,” describes the symptom, but not the complete picture of how I’m actually doing.

I found myself doing this all the time, especially with my doctors and family. As my sickness wore on, I realized these symptom-related statements were not an accurate description of how I feel, and had nothing to do with who I am.

I get a much better response from doctors, family, and friends when I change these “I am” statements to “I am feeling strong today, but my head hurts.” I know it sounds like semantics — which honestly it is, but I challenge you to try it. The next time someone asks you a question that you could answer the old way with the typical “I am” followed by a symptom, try answering how you are, and then mention the symptom only if it is needed. If a nurse asks you how you’re doing, you could possibly say, “I am feeling hopeful, but my chest hurts.” Doesn’t this sound better than beginning with “I am having chest pain?”

After trying this, I have found everyone I have interactions with has been so much more positive — or at least not at such a loss for words. As a bonus, I also feel better about myself, and not tied to a lump of symptoms that makes up my disease, but not me.

Originally published: June 13, 2018
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