When I Heard a TSA Agent Ask If the Medication for My Rare Disease Was 'a Joke'

I love to travel, but it can be very difficult process for me due to the medication I take for my rare disease. The medication is an oil that is transported in a large jug. To make it more complicated, I am on a medical trial, meaning the medication is not FDA-approved. I have to carry it on the plane with me since if my baggage was lost, I cannot just pick it up at the local pharmacy. Traveling gets more and more difficult as, understandably, security requirements get more rigorous at airports around the world. Airport security has always taken me longer to get through, but recently, it has become even more stressful.

I recently went through an experience at airport security that exemplifies living with a rare disease, especially an invisible one. Foremost, I want to say how grateful I am for TSA personnel at airports and cannot imagine how much pressure they must be under on a daily basis. I am glad security is so rigorous and I know they are doing their job to keep everyone safe. I am sharing this experience not to criticize TSA or even this one man in particular, but rather to expose a greater example of living with a rare and chronic illness.

I moved through security as I normally do, but as always, my medicine, along with my being and all my other personal items, needed to be searched and tested. My first reaction was to step to the side and not touch any of my belongings, as I have been told before. I knew it could take anywhere from five to 45 minutes so I just waited, watching as people passed me by, curiously looking on. One of the TSA agents said to me, “You know exactly what to do! You are so calm. You must do this a lot.” I laughed and said “I do!” Then, she turned her attention to the next person coming through the detector.

While I was waiting, bubbling with excitement for my vacation that was a matter of hours away, I overheard one of the agents examining my medication bottle say, “What is this? For investigational use only?… What is this — a joke?” There were a lot of people whirling around and I don’t think he realized I was standing there, within earshot. At least I hoped not.

At first, I was stewing. “A joke!” I thought “Don’t I wish it was joke? All the medications, hospitalizations, stress, pain… if only!” It took a few minutes, but I snapped myself out of it, cooling down. I learned long ago that the “what ifs” and the bitterness is a downward spiral that I need to stay above. When you struggle with illness, you build up these walls and a tough skin. If you crumbled every time someone did not understand or said a mean thing or you got sick, you would spend your life curled up in a ball. When something pierces through that wall, even just for a moment, especially something as little as an under-the-breath comment, it’s an odd feeling.

I questioned, “Should I say something or should I let it go?” There are times to make a point, when it can actually make an impact, and there is a time to let things go. That moment, in airport security, with TSA agents trying to do their important jobs and travelers trying to get to their destinations, was not the time to make a scene, in my opinion. All I wanted to do was get on a plane, with my medicine in hand, to enjoy my vacation with college roommates and at that time, that was more important than proving a point that likely would not have even gotten through in that scenario. I just looked at all the TSA agents, smiled, even the man who had made the comment, and went on standing calmly out of the way. The best time to make a point and have people actually listen to me is not when I am enraged. If I am too overtaken by emotion, I cannot clearly get any point across, never mind reach someone.

When the agent called my rare disease a joke, the second thing I felt, after de-escalating my initial shock and anger, was sadness. If I am being 100 percent honest, the comment made me more sad than it did angry. Yes, I was angry at the insensitivity, but my heart also sank when I heard the comment. I know it is often hard for people to understand what they cannot see or have not personally experienced, but when people say something so blatantly insensitive, it hurts. There is no other way to describe it; it just hurts. It was like all the effort I had put in, the years dedicated to managing my disorder, all the commitment and effort, was belittled to almost nothing in a matter of seconds. To me, that medication is my lifeline, not a joke, and it hard when others can’t understand that.

Through my experience, I have come into my role as living as a rare disease advocate, finding so much personal growth in inspiring and teaching others, but it is also important for me to remember that I don’t always have to be a rare disease “warrior.” I aspire to be that strong person, a voice for the rare disease community and a lot of the time I am, but it is not a pressure I always need to put on myself. I can just be a person who gets a little sad when someone makes a snide comment.

This experience speaks to a larger issue of society’s view toward illness and, just more generally, our ability to be empathetic. In the third stage of this experience, on my plane ride to my destination, I was able to think about it more objectively. My thoughts drifted toward a hope that that man, that man’s family member or someone else close to him never has to suffer from the pain or fear, but most prominently, the isolation, that comes with the diagnosis and symptoms of a serious, lifelong illness. I hope that they never have to feel singled-out and silly, the way he made me feel.

 

Isolation is one of the biggest social challenges people with illness face. When you are ill, and especially in a chronic or rare way when there are not many who share your experience, you may feel like you are in it alone and most of the time, you are. I am just going to come out and say it, people sometimes act weird around illness (this includes people who have struggled with illness! This is including myself.) It is like, when faced with someone else’s illness, we forget everything we know about it and would have wanted when we experienced it ourselves. We often don’t know what to say or do so we sometimes automatically distance ourselves. Healthy people over here  and sick people are over there, and once the sick people get better, they come back, out of a world all encompassed by their illness.

It is the classic us versus them mentality that comes up time and time again in situations where we don’t understand each other or are different. But the crazy part is that we do understand. We have all been sick before or been in the inner circle or caretaker of someone who was ill. We can maybe not understand to the same extent as someone who has a rare or chronic illness, but the basic mental toll illness takes is universal. Even if it is “I had a cold,” I bet you remember what it felt like to feel miserable, not able to breathe or swallow, missing out on social events or feeling like you can’t keep up at work. For people with a chronic illness it is like that, but a lifetime of it and you never get “better.” For people with rare disease, it is like that, but it is not always known what to do to make it better.

It is this distance we create that allows us, in a moment in time when we feel so far away from that person’s experience, that we feel OK laughing off someone else’s struggle. We might feel uncomfortable so instead of asking a question (for example, if the TSA agent would have just asked me what the medicine was for, I would have gladly shared the information with him) we laugh it off. With a rare disorder, I am constantly finding that fine line between my disorder being the most serious, life-or-death thing and being able to make light of the situation, for my own sanity. My illness brings about situations that I often have to laugh out loud at the ridiculousness (e.g getting the bomb squad called on me for trying to transport my medicine on a plane, people giving me weird stares for putting my medicine into drinks at restaurants, chugging gallons of Gatorade with added sugar, buying an ungodly amount of blender bottles and yogurt) or I would just lose it. It is OK to make light of illness when it is done out of respect, when you know it is what will make the person feel better. That is making light of something through knowledge, not ignorance, which is an important thing to remember when talking about illness, in general.

However, this again is not to criticize because we have all done it at one point or another, not even thinking about the implication or the person’s feelings who really has to live that experience. It is not our struggle and therefore, it is easier to distance ourselves. It’s not our problem, right? Wrong. Because rare and chronic illness, along with a lot of other societal issues — healthcare, human rights, education, are not your issues or my issues, they are our issues. If we do not attack them together, put our heads together as to how to solve the problem or at least counteract the negative effects, then none of us benefit.

As best said by my longtime doctor and friend (yes, when you have a chronic rare disorder, if you are lucky, your doctors become friends!), “I chose a career in medicine because unlike most jobs, when you and another person are on opposite sides, being a doctor it is all of us, banning together, against disease.”

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Thinkstock photo by BSPC