LIVING WITH CHRONIC PAIN

LIVING WITH CHRONIC PAIN

A COLLEGE STUDENT WITH A CHRONIC CONDITION

By Sofia Carlos

Out of every way I had imagined my college experience would be, sitting in the waiting room of a rheumatologist’s office surrounded by baby boomers was not one. Having a chronic condition like fibromyalgia, this is where I find myself every six months to check in with my doctor. Walking into the office is always the same experience. The receptionist at the front desk looks confused and asks me if I’m in the right office, I say yes. I pass the time by playing Tetris on my phone, occasionally looking up as I’m met with stares from old people. Being that I’m the only young person in the room, I assume they’re trying to figure out why I’m at a rheumatologist’s office. I don’t blame them, for the longest time I was too.

Like most people with chronic conditions, it took a couple years for me to get an official diagnosis after the symptoms began. I had just finished my first semester of college, so I reduced my feelings of exhaustion to a busy semester. However, when the new semester began a month later everything got worse. I was even more exhausted than before and experiencing random episodes of widespread pain. After going to the doctor, I got a call a week later telling me I tested positive for antinuclear antibodies. This meant I could possibly have an autoimmune disease. So, off I went to the rheumatologist.

I knew what I was experiencing was serious when the doctor ordered tests for conditions and diseases I’ve never even heard of. I must have had at least a dozen vials of blood drawn, even the woman drawing the blood let out a surprised “oh” when she saw how many vials needed to be taken. Waiting two weeks to get test results was nerve wracking but getting the call proved to be even more stressful. Every test came back negative; everything was fine according to the tests. I couldn’t help but feel relieved and disappointed all at once.

I was glad to hear I didn’t have an autoimmune disease but had no idea what was going on with me. I still had symptoms; in fact, they were getting worse. Maybe it was all in my head. Maybe everyone is in pain and tired all the time. I was gaslighting myself to rationalize the fact that no one knew what was wrong with me. It was easier to cope this way.

I kept going to the doctor, the tests continued to come back negative. Throughout this time the chaotic mix of the pandemic, school and the 2020 election season kept me distracted from fixating on my own health unraveling. Remote classes proved to be beneficial in my case. I felt horrible most of the time, so being able to stay in bed with a heating pad to ease my pain was ideal. If classes had been in person, I’m not sure how I would have been able to keep up. I was in a state of limbo.

felt like my body was shutting down but on paper nothing was wrong with me. I couldn’t do anything but monitor my symptoms. That was the most frustrating part, the waiting game of watching my symptoms come and go. One week I’d feel normal, almost like my old self again. The next week I couldn’t even sleep without being woken up at night with pain taking over my body.

Almost two years later I was diagnosed with a chronic disorder called fibromyalgia. After googling what it was, the diagnosis made sense. The widespread pain, fatigue and flu-like feelings were all symptoms of fibromyalgia and what I was feeling. The diagnosis gave me reassurance that what I had experienced for two years was real, not just in my head.

ven after being diagnosed with fibromyalgia, I found myself stuck in a state of anger and frustration for the longest time. Strangely it was directed at myself. I felt like my body had betrayed me. Instead of my mind and body moving in synchrony, they had become separated, foreign to each other almost. In my head, I could still live my old life, my body flourishing on minimal sleep with caffeine constantly coursing through my veins. I could pull all-nighters and go out the next day feeling fine. That’s gone now. Maybe I’m being overdramatic, but it felt like the life I thought I was going to have just left unannounced, without warning. Being preoccupied with school and other responsibilities, I didn’t have time to fully process or accept this. I guess now I’ve finally had the time to come to terms with everything.

’ll admit it’s been a struggle to change my mindset and lifestyle. I still find it difficult to recognize that I have a chronic condition. In my medical file it lists fibromyalgia, but I struggle to see myself as someone living with a chronic condition and chronic pain. It’s something I’m working on. I’ve accepted that I have a chronic condition, but I think I haven’t fully recognized I’ll live with this for the rest of my life. Fibromyalgia isn’t a progressive condition and I’m grateful for that, but the thought of it being lifelong is a lot to take in. It’s already stressful enough to think of what I’ll be doing 20 years from now, let alone how I will be doing. Will my symptoms be better or worse? Will the medication I take still be effective? It’s these questions that fill my mind when it drifts to the topic of my health. Before I address the future though, I have to be able to accept the present.

I've been in pain a lot lately. It always gets worse around this time of the year. The weather gets colder; finals season causes stress which in turn causes my symptoms to flare up. Each winter I get more familiar with what my body is trying to tell me. The previous winters I’ve challenged my symptoms instead of listening to them. I’ve been learning to work with my chronic condition and pain instead of exhausting myself fighting against them. It hasn’t been easy but it’s necessary to move forward with my life as best as I can. I still hold hope that there will be more research done in my lifetime; maybe even a cure will be found. For right now though, all I can do is learn to live with what I have and make peace with my health.