The One Question People Never Ask About My Chronic Illness

After three weeks at home for Christmas break, I was easing myself back into the grind of university life catching up with friends, buying textbooks, and scheduling my classes and lab hours. Unlike most of my classmates, my body was adjusting to the new quarter as well. Being home allowed my body to rest as much as it needed, and I spent most of break sleeping, spending time with my parents, and sleeping some more. College can be extremely stressful on the body, but even more so on a chronic pain patient. I was diagnosed with complex regional pain syndrome (CRPS) at 13, and eight years later I’m still fighting the same battle. When I moved off to college my CRPS became much worse, and during my second year I had to take time off to receive treatment. I am now in my fourth will be graduating in the spring. I’m currently writing my honors thesis on how chronic pain affects memory performance.

At first glance, I look what most people would consider “normal.” I’m usually in class, lab, or studying at the library. I go out to eat with friends or on study dates, and occasionally go out and do something fun if there aren’t any exams coming up. I smile a lot and look genuinely happy. What people don’t see are the mornings I wake up and I’m in so much pain that I can’t gather the strength to go to class, let alone get out of bed. They don’t see the flares where I’m sobbing and paralyzed from the pain, praying for opioids and sleeping pills to kick in. They don’t see me in the hospital, tethered to an IV pole while studying for exams.

On the rare occasion I share my condition with someone, their initial reaction is shock. Usually they offer their condolences and ask me a lot of questions. “Is there any treatment?” “What does it feel like?” “Have you tried ______?” I don’t mind answering these questions, in fact I appreciate the opportunity to educate people on my illness, in the hopes that maybe they can share it with someone else, and so on. So when I was catching up with one of my friends over text, I was surprised when he hit me with a very blunt, honest question:

“Are you depressed or anything?

You have such a positive mindset.

It’s not a front right?

I’m pretty sure it is…

You’re just trying to stay positive…

But CRPS is so taxing on your body.”

For a moment, I just stared at my phone in quiet shock. No one (apart from my healthcare providers) had ever asked me that question. Patrick and I had worked in the same research lab for a year and had classes together, but we weren’t close friends who went out together all the time and shared our deepest darkest secrets. I read it through a second time, and settled for honesty. “I struggle with some pretty bad pain-related anxiety. I was also diagnosed with some sort of post traumatic pain disorder. I’ve never been officially diagnosed with depression, but sometimes I feel very depressed,” I replied.

We continued chatting about different treatments and underlying causes of CRPS. At times, I find this sort of conversation repetitive and exhausting, but Patrick approaches everything very scientifically. As a psychology major with a concentration in neuroscience, I appreciate this very much. He has a way of looking at problems differently and offering solutions that most would never think of, and it’s refreshing. Many times it feels like as an undergraduate, he would be a better doctor than half of the doctors I’ve had.

The answers I gave Patrick are things I don’t really share with people, and partially because people don’t usually ask. Anxiety and depression still have a very heavy cloud of stigma lingering above them, and often are quietly ignored. Another reason I don’t often share my struggles is because it’s my way of trying to protect people. If they knew how much I really suffered, they would probably be alarmed. I hate the fact that my illness causes pain to my friends, family, and loved ones, so I take all the pain and sadness and I hide it behind a smile. I have a poor habit of taking my pain (physical and emotional) and bottling it up, burying it as deep as possible in the hopes that it will go away. When people ask me if I’m OK, I tend to automatically respond with “I’m fine.” A part of me feels that if I keep repeating those words, eventually they will come true.

Over the years, I’ve come to accept the fact that I am not fine. The smile on my face hides the pain underneath, but that doesn’t make my smile any less real. I’m happy to be here and to just have the chance to live. That short conversation made me reflect on how I always try to be positive for others. It’s true, CRPS is incredibly taxing on my mind and body. No matter how hard I want to beat it, some days I just don’t have strength in me to fight. I tend to focus more on the physical pain of my condition, and ignore the mental half. If I allowed myself to mourn my deteriorating health, I would never do anything of positive impact. Dwelling on suffering is the surest way to be miserable, and I don’t want to be miserable.

Of course, with something like this, there are always going to be bad days. They’re going to drag you down, suffocate you, and you’re going to have to fight like hell just to breathe.  So, how do you keep going? Everyone has a different answer. Some do it for family, or their career, and some choose not to keep going or just can’t. I’m not really sure what my answer is, because in all honesty it changes day to day. I just know I want to keep going.

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Getty Images photo via kieferpix