To the Doctor Who Told Me Not to Give My Illness Power by Naming It

Dear medical professional whom I just met,

When speaking with you one day, you said something I couldn’t shake. When I was about to tell you I have Lyme disease and a co-infection called Bartonella, you told me not to give an illness power by naming it. You continued to tell me why giving up my power is negative for my health, as if you were lecturing a student. At the time I was uncomfortable and shocked. I know you meant well, but you upset me and it took months to figure out why. I understand that claiming Lyme disease does declare power over my being. It could even be detrimental to one’s health because my identity is not an illness. I also understand that our words have meaning and there is power in positive thinking. However, it is more complex.

The most obvious reason why a diagnosis is important is that once you are properly diagnosed with a condition you can seek appropriate treatments for that condition. It is the only way to really tackle a condition with the hopes of finding a cure or at least remission. If you had bacterial pneumonia, you’d want to know that, right? You wouldn’t want to just guess that it was a virus – or you’d never get better. You would go to a doctor with your symptoms, wait for a diagnosis and go from there. So why would this be any different? It seems counterproductive at best.

In addition, once you have a label you can advocate for yourself in a way you cannot if you do not have a proper diagnosis. It can also help you find a supportive community of people, united by the same label. There are many other reasons why having a diagnosis is good, but I want to move on to the concept of power.

Telling me that a chronic illness has no power over me if I don’t “name” it is harmful. I have struggled with chronic Lyme disease since I was 10 years old and it has altered my life dramatically. Because of Lyme I had to drop out of high school and be homeschooled, ultimately earning my GED. I went to community college and could only take a class or two for a year because of fatigue. It took two years before I could carry a course load of four classes. Once I got a lot better I went away to college, but after a year and a half I had to drop out because of a relapse. At the moment, I have no stable job and am not going to school. My life revolves around getting better so I can go back to school, but this inherently is determined by my health. The truth is Lyme disease has a lot of power over my life. I do not want Lyme to have power over my life, but I cannot deny the truth. I try not to give it power over how I define myself or my dreams for my future, but that isn’t easy. Right now it is the sole thing stopping me. Whether or not I label an illness does not change the fact that it has deeply impacted my life, and therefore has power over me.

Most importantly, when you told me not to give my illness power over my life, you are invalidating my experiences. My chronic illness does have power over my daily and long-term actions. I cannot change this fact by removing a word from my vocabulary. It is also the daily reality of countless chronically ill people, and you dismissed that fact with your comment. You made me feel silenced, misunderstood and invisible in a world that rarely understands or cares about the chronically ill. Therefore, next time you try to help someone with a bit of advice about chronic illness I suggest you listen. Then maybe, and I mean maybe, consider saying it.

This post originally appeared on Chronically Empowered.

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