Chronic Illness Stethascope

My FDA Training – Stop Identifying With Disease

You probably didn’t know this, but every 25 cents of every dollar spent in America goes to a product that has been tested by the United States Food and Drug Administration (FDA).

That’s one of the fun facts that I learned last week during my FDA Patient Representative training in Maryland.

Before getting hired as a Patient Rep, I had no idea that there was such a position. To give you an idea of what this role is about, when a new drug or medical device reviewed by the FDA for approval, Patient Reps are brought in to review the product and state how they feel it will impact their patient population at large. fda

In other words, one Patient Rep could be the voice for many thousands of people who also have the same disease they have. The position comes with a great deal of stress and of course, prestige.

That’s all great, but it’s not what this blog is about. I actually want to tell you what happened when I arrived at the check-in desk before the start of my FDA training.

I greeted the recruiter who brought me on board; she is awesome. Her colleague then asked me to find my name tag among about 50 other badges that were laid out on a nearby table.

When I found my tag, I noticed that the ID displayed my name, along with the word “thalassemia” underneath it, in bold letters.

My brain cringed at the thought of identifying myself as “Josephine Bila, Thalassemia.” Fortunately, I caught myself mid-cringe and said, “Stop that nonsense. Thalassemia is just a word!”

I backed away from the table and watched a few other patient reps pick-up their name tags. Each person had the same reaction that I had. Find name, pause, cringe, slowly pick up tag and uncomfortably attach to lapel.

I started to really think about how caught up our minds are with the words we use to define certain things, such as medical conditions. One word can carry immense social stigma, fear, and past memories of pain.

As the training got underway, I considered how fortunate each of us were to actually be free (i.e., not in a hospital room or tied to an IV), mobile, and capable of using our minds to receive and comprehend the information being given.

Yes, we all had a medical condition severe enough to warrant us the right to work for the FDA, but in that moment we were still free. These are the miracles people often take for granted.

People constantly argue about whether my condition, thalassemia, is an “illness” or “disease.” Both words mean the same thing, but what’s important to examine is how our minds identify with and hold on to particular words.

The mind can either think negatively or positively about a word. So, if a word is seen as more positive or socially acceptable, we often want to identify ourselves with those words.

In the end, we should stop ourselves from identifying too heavily with any words. This is what I mean when I say “stop identifying with disease.” We are not words. We are comprised of molecules, which are made up of atoms; all of which appear to form a solid (i.e., our bodies). Seeing life beyond words is important, because we must remember that we are so much more complicated than any word could ever be.

What do you think about this topic? Tell me in the comments below.

To Life Beyond Words,

About the Author

Josephine Bila

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I’m Josephine Bila, LMSW, a licensed social worker for you — the health seeker who craves an energized body, strong relationships, and the willpower to overcome any obstacle.

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  1. This is so true. We tend to identify ourselves with the disease that we have been diagnosed with. Or, more importantly, we don’t WANT to be identified with the disease. We don’t want people to say, “That is Josephine. She has Thalassemia.” Just as we wouldn’t say, “That is Josephine. She is White.” Or, “She is small.” You get the picture. For the longest time, I found it difficult to say, “I have MS.” I didn’t want people to remember that every time they saw me. But for months after I was diagnosed, that was all I heard in my head. MS MS MS MS MS. Sometimes we create our own haunting mantras in our heads, just as you mentioned. It is just a word…it is not who we are. Even better, we are not our bodies. We are the spirits that have inhabited these bodies.

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