When you’re throwing your life into two suitcases and moving across the country, nothing seems permanent. You pluck things from midair: pieces of your home, mementos from childhood, clothes you hope won’t inhibit the acquisition of friends. I was seventeen, diagnosed with a disorder* resulting in lifelong, chronic pain, and had absolutely no understanding of how seriously I should approach my burden. There were more pressing demands.
The first reaction I experienced personally and then from others was, “well, it’s not terminal.” This is correct, but not terribly enlightening. There is no stratum to the suffering wrought by uncooperative human bodies. Since it wasn’t “that bad,” I came to frame it as something I could shift to the back of my mind, the way children born with a chronic but reasonably managed disease learn to do as naturally as speech.
Once settled into my second semester, I realized I had miscalculated. Symptom remission abandoned me entirely, and about 85% of my energy was spent trying to divert attention away from pain. This left around 15% for me to devote to being a full-time student/part-time human. I took stock. One, I knew nothing about what I was experiencing. Two, I could not trace why the acute episodes were so frequent and severe, and the medical Mecca of Boston wasn’t yielding much better success than the wasteland of Las Vegas. I wanted my life back.
I began to give scheduling preference to doctor’s appointments over meetings with professors that might give me an academic foothold and professional prospects. I had to transform an overwhelmed seventeen-year-old creature into a competent advocate for my own care. This was not a conscious choice, but a scuffle between my health and my desire to be conventionally successful. That scuffle could have been a calm negotiation if I knew these things:
How College Students Can Manage Chronic Pain
1. Yes, you are “sick enough.”
It’s not the Pain Olympics. Disability and accommodation services are available at most universities and colleges to any student who might need adjustments in order to be successful. I did not avail of services until I was a senior, which was a huge mistake. I imagine professors who were graced by my classic opener (“Hey, bladder pain is all I can think about. Looking forward to your course!”) may have also preferred an intermediary. I was terrified that my invisible illness would be scoffed at because I looked too young, or that pain patients are “fakers.” Most professors are wonderfully accommodating about flexible deadlines, attendance, assistive devices, and alternate assignment options once disability services initiates a dialogue.
2. You have to be an advocate for yourself.
I became one by accident; out of frustration as my illness pushed me over the edge. I was tired of lacking control and watching my grades and quality of life slip through my fingers. I wondered why I couldn’t summon the strength to overload and maintain my GPA with an internship, sports, and arts like everyone else. I learned to advocate for my interests with my doctors due to their tendency to shrug and say “it’s not acute and we can’t help with the pain.” I went through an aggressive phase of hunting down every specialist I could find and demanding an answer to my echoing “why?” It utterly consumed my time and energy. By the time I graduated, I felt I knew more about chronic pain than my major studies.
It helps to be informed, but I wish I had realized that the interests I advocate for are something I can define. I learned to pursue the things a person who has chronic pain and ambition truly needs–not answers, but care within my schedule/budget and a daily lifestyle that supports my health. It’s fashionable to rely on sleep debt and “just push yourself more” in college; it’ll also take your pain from manageable to nightmarish.
3. Have plans for your ongoing & emergency medical care in place.
This is hard to anticipate, but once patients clear the first hurdle of making room to acknowledge your illness for what it is, it’s easier to be prepared. Have extra medications and emergency supplies in your dorm: heating pads, (I know, electric ones aren’t allowed. Find an alternative that you can microwave!) pain medication, earplugs to block out humans when you need a 3 pm pain nap, comfort items, props to sit or lie comfortably…anything that eases up the pain.
Parents can help coordinate the transfer of medical records from primary care providers at home to the university medical service. If possible, scouting ahead for specialists to take over care and chronic pain management is a great strategy. Specialists often book from two to seven months out, especially in larger cities, so it’s worth visiting prior to move-in to establish the patient and start a relationship. Pain management is especially tricky; doctors assume college-age students want to sell their medication or are too young to “really” need it, underestimate the severity of pain, and are often hesitant to be available for acute pain situations. Plan to have a dorm room safe for medication.
Know who to call in an emergency. Can your doctor treat acute episodes, or only routine visits? Should you go to an emergency room or just the campus health center? Can you set up routine testing to prevent issues before they are acute? Have a plan in place and talk with a couple of friends/family members about it. Provide them a medication/allergy/conditions list in case of emergency.
Finally, print out and laminate a card for your wallet with medication/allergy/conditions and contact information.
If pain is a routine part of the patient’s life and occurs independent of an episode that might require emergency room care, it is essential to find a method of management that will not be interrupted or altered. The student will encounter constantly shifting academic, emotional, and professional sands in college–no need for the part of their life where they are called “patient” to be unpredictable.
4. Make time to breathe.
College is often presented as a non-stop adventure where you work hard and party harder until you go home for break and give your ruined corpse the respite of three weeks’ sleep and non-dining-hall food.
You’ve got chronic pain that functionally limits activities some or all of the time. Take in every exhilarating moment you can; late nights in the dorms, late nights in the library, adventures abroad with your lifelong best friend. Your time in college does not need to look like the unattainable sleep deprived fever dream some kid two doors down can maintain. (Bad news, Kid-two-doors-down, nobody should try to maintain it!) If you need to slow down and take breaks so you can accomplish most of what’s on your list, it is perfectly valid.
Take time to breathe. Take time to take care of your body–it will take you further if you treat it gently. Sleep a reasonable amount of hours. Don’t push yourself to a Pyrrhic victory just because someone else might not have the pain limitations you do.
This reflection is challenging because it involves acceptance at a time in your life where you’re told acceptance is to settle, and to settle is to perish. It takes a lot of trial and error to learn your limits with chronic pain, so make a point to be cautious and observant at the beginning. Tried to wedge too many appointments in between your class schedule this week and had to spend the weekend in your dorm, glued to an ice pack with your own tears? Scale back how much you take on, observe how much you can comfortably handle without provoking a pain flare. Put it into practice. Keep practicing. Your pain will not be your entire story.
* Interstitial cystitis
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Chaya Rusk is a BU alumna and lives in Boston with her partner and their toothless polydactyl cat.