To the Nurse Practitioner Who Scoffed at Me for Using the Elevator

To the nurse practitioner who proceeded to belittle me for using the elevator,

Ehlers-Danlos syndrome (EDS) is known for notorious pain. It is a connective tissue disorder that is caused by a defect in collagen. Collagen is the “glue” that holds the human body together. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. When there is a defect in the collagen (known as EDS), no part of the body is off limits from dislocations, subluxations and debilitation. Along with everyday pain, some types of EDS can be fatal. Fatalities can be caused by aortic dissection, various vascular issues, aneurysms and arterial/organ rupture.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

However, people with this disorder are resilient, often carrying on as if the pain is minuscule. On days that seem nearly impossible to get out of bed, somehow we manage. With braces, mobility aids, medications and the support of others, we can be almost functional. Yet even with all of those, we may feel immense pain.

Along with the physical problems we endure, there are many emotional problems we may face as well. Numerous people do not agree with the diagnosis. “You look fine. It’s all in your head. Stop being overdramatic” are phrases almost every EDS patient has probably been told more than once – by strangers, friends, and relatives… and now you. It can become emotionally draining when we are told we are just “doing it for attention.” That’s why, for many of us, a true diagnosis of Ehlers-Danlos comes as a relief. Yes, we are officially diagnosed with a disease that has no cure. No, we did not choose to have this, nor are we excited. But yes, this means that it is not “all in our head” and it gives us a sense of validation, and that is something to be relieved about. That our pain and struggles are real.

I am a singer who is currently exploring Europe as part of an Honor Choir tour. The choir’s schedule is super fast-paced and jam-packed with singing in the world’s most famous cathedrals, exploring towns and taking long bus rides. It is a huge honor to be part of such a talented group and I do not want chronic pain to keep me from experiencing other countries. Pain-wise, most of these days have been excruciatingly challenging.

Many EDS patients can agree: traveling is one of the most painful experiences. For multiple hours a day, we sit in hard, spine-crunching bus seats and navigate through crowded tourist attractions where we get pushed, banged and bruised. We may dislocate our fingers while writing, sublux our shoulders while opening our music scores, pop our jaws while eating lunch and our legs go out from underneath us at the most inopportune times. We never have enough time to rest before we repeat the same rigorous daily pattern. I have learned to listen to my body and take the appropriate safety measures in order to help me succeed on this tour. Sometimes that even means taking the elevator in hotels when my spinal pain won’t let me take the stairs.

On this particular day, I was in a lot of pain. From my neck to my ankles, everything hurt. Traveling did not make it better. In fact, touring made it increasingly worse. I decided to take the elevator when we got to the hotel that night because I didn’t feel like I could make it up the staircase with my luggage. That night I ran into you, a nurse practitioner, while waiting for the elevator.

You asked why I was taking the elevator because you saw no physical evidence (crutches, canes, wheelchair, etc.) that I was injured. I told you I was scheduled for a spinal fusion surgery when I got back to America and proceeded to tell you the surgeon’s name. I also showed you my back brace that the surgeon gave me for the trip and asked if you would like to see my x-rays (which I had saved on my phone). I was OK with explaining my situation and told you I have a connective tissue disorder that causes many chronic issues, and that I was having a bad pain flare-up. To be completely honest, I was excited to use this moment to teach about Ehlers-Danlos.

“I’m a nurse practitioner with two torn meniscuses. They hurt. You don’t need to use the elevator. You don’t look like you’re in that much pain. You can use the stairs. Save it for the older chaperones with knee problems.” You rolled your eyes as I got into the elevator. This was the most awkward elevator ride I’ve ever experienced. Your ignorance baffled me. After what seemed like eons, the elevator doors opened.

“Have a good day,” I said as pleasantly as possible when I got off. I was in awe. As a nurse practitioner, you are supposed to be understanding of those with medical issues, even the ones you do not understand. You did the exact opposite today. You brushed me off when I tried to explain what was going on. You assumed I was just some lazy teenager who didn’t want to take the stairs. You assumed incorrectly. Your insensitivity is an example of why many EDS patients try their best to mask the pain; they feel they will be undermined. And that night, that’s exactly what you did.

 

So no, I was not being lazy. It was not because I just didn’t want to walk up the stairs. I am trying my best to make ends meet for the rest of the European tour. And if that means I have to use the elevator instead of hurting my spine to the point where I’m not able to take part in the singing, so be it. I’m working really hard to make it through this trip in spite of my diagnoses. But make no mistake, there is pain. A lot of pain. A positive attitude is the only thing I can control.

Thank you for giving me a chance to explain why I was using the elevator. Maybe you’ll take into account chronic and invisible illnesses next time you try to reprimand a seemingly “healthy” person for using an elevator, sitting in a disabled seat on a bus, or taking a disability parking spot. Maybe you’ll have a future patient with a chronic illness. I hope you’ll learn how to accept them without making them feel belittled. I also wish you are able to find some compassion so in the future you can have some sympathy towards those whose struggles you do not understand.

Best wishes,

Sydney

Thinkstock photo via DmitriMaruta.