Having Chronic Pain As a Young Scientist and Scholar
Advice, Challenges, Anecdotes, & Ways in Which Science and Academia Can Support Those In Pain
My Journey with Pain
At the time of writing this, I am 26 years old, and I just graduated with my bachelor’s degree in science, with a major in Biology and minor in Psychology in May 2021. It was a long, arduous road to get my degree, full of uncertainty as well as setback after setback.
I hope that by being open and transparent in my own journey, that I can help others not have to feel as isolated as I did while trying to navigate balancing my health, pain, and mental health with my studies and research. No one talked about what it’s like to be young and in pain in academia, so I often tried hiding it for fear that I would be deemed lesser, or unworthy.
To read more about my journey of getting a diagnosis while being young with chronic pain, see the blog post I wrote for PRF (Pain Research Forum) “Too young to be in this much Pain“.
Great, You Graduated! Now Say Goodbye To Your Health Insurance
For the last two years, I have had health insurance through my university. I paid for it with my financial aid. But, since I graduated in May, my coverage ends a week from now. So, in one week I will be uninsured.
Having less than three months to secure a job that offers health insurance is difficult but given the current times it is near impossible for many students, especially those from low-income backgrounds. When I asked for advice on what to do while I am still in the job market, I was told to simply “see if go back on my parents’ plan”.
First, when you hit age 26 in America you can no longer be eligible to be on your parents’ insurance. I am tired of it being assumed that every new graduate is that young. Second, it is bold to assume that everyone has the luxury of having parents that have insurance. Once again, those who come from a Low Socio-economic Background get left behind.
My pain medication helps me be able to function, which allows me to be able to work. But, to get pain medication you are required to do monthly appointments with your pain clinician. So, without insurance, every month I will be paying $250 for a fifteen-minute office visit to refill my medication, and that does not include the cost of the medication itself. Here’s to hoping I do not get sick on top of everything. See the problem here?
How my Pain Has Shaped Who I Am
Outwards, you would never know I suffer from pain on a daily basis, but that is the way of chronic illnesses- invisible, yet unrelenting. I often feel as if I am a voodoo doll- always being poked and prodded at.
Externally, I am constantly taking jabs from a society and medical professionals that do not believe my pain is real, thinking I am just drug and attention seeking.
I constantly must fight for my right to exist in a world where my pain only seems to matter when it is convenient for others. The second my pain becomes an inconvenience is when the compassion dissipates, and ableism seeps in.
I have experienced firsthand just how overwhelming and debilitating medical conditions can be, especially when nothing seems to work. It is through my own journey in navigating chronic illness and pain that has led me to shift my own feelings of powerlessness and hopelessness into a transformative, empowering perspective allowing me to understand and appreciate the staggering magnitude and need for translational research, advocacy, and science communication.
So, being in that I am a researcher in the neuroscience of preclinical chronic pain as well as a patient, I have taken it upon myself to approach my pain differently and share my experiences as I navigate the complex world of academia and science.
As a young scientist myself, I’d be lying if I said I have not had moment where I doubted if I belonged in science. But everyone has these doubts. There’s actually a term for it too. It’s known as Imposter Syndrome. If you’re struggling with feeling like you don’t belong, here’s a great article titled “Coping with Imposter Syndrome in Academia and Research”.
When I was an undergraduate, I felt completely alone in navigating the murky waters of dealing with my chronic illness and chronic pain. As I began dipping my toes in the world of research, I struggled with feeling inadequate due to my health. Why would any PI (Principle Investigator- meaning head of a laboratory) want me in their lab when they could have a healthy student? Wouldn’t I just be a burden?
You Belong in Science
Just know. You are not alone, and your condition does not make you any less worthy of being in STEM.
I fundamentally believe in encouraging inclusion and bringing awareness to the full spectrum of diversity. We can all learn from our differences to have more impactful and socially aware scientists, researchers, educators, and medical professionals.
The biomedical field is in dire need of more inclusion and diversity for those with disabilities, and it is important invisible illnesses start being included in the conversation instead of overlooked.
If you are a chronic pain patient, you are probably familiar with the tedious requirements of monthly appointments with your pain clinicians. If you are going to have to go to them, you may as well get the most out of them. Something I learned during my time as an undergraduate student and researcher is the importance of being proactive in managing my pain instead of purely reactive.
During each of my monthly appointments with my pain management clinician, I talk about how academia, research, and so on are going in my life. Then, I discuss my predicted stress levels and the ways in which they would likely influence the intensity and onset of my upcoming pain levels based on the trends I had identified throughout the years of navigating being a pain patient and college student.
If I know that this coming month is say finals, based on my experience of it we can predict that my pain levels will skyrocket. I will probably get sick as my immune system freaks out even more than normal when extra stress is added to the mix. I will need to up my pain medication for that period of time, to allow me to be able to function enough to get through the long, sleepless nights and days. (This dosage will be decreased back down to my “baseline dosage” when exam period is over).
I know that the migraines will get worse, so before waiting for that to happen, I can schedule to have nerve block neck injections directly prior to when I expect the flare up to be.
I’ll also likely need steroids as well as stronger antiinflammation medication, so we consider the option of prescribing them now, so I will have them to take exactly when the predicted flare up first occurs- this works much more efficiently than waiting for the pain flare up to get to its peak- at which time it is much harder to treat and manage).
This can shave days, even weeks off in recovery time.
If taught correctly on both ends, the patient and practitioner can start working more proactively together. Not only does this benefit the clinician by making their treatments smoother and more effective, but it also is a huge benefit to the patient- both physically and mentally. This approach helps put some of the control back into the patient’s hands- a huge deal for pain patients who tend to feel so desperately helpless and exhausted with their health.
Succeeding as a Scholar in Pain
Achieving success as a scholar while pain is difficult, but not impossible. Do not let anyone tell you that you do not belong in science, no matter how well-intentioned they may seem. I have had a multitude of medical doctors- ranging from rheumatologists, neurologists, general practitioners, and pain management specialists urge me to reconsider my career path. When I first entered College, I was told that a science degree would likely be “too much” for me to handle, and to consider changing majors or dropping out entirely.
Luckily, I was persistent and did not listen, and although it took a while, I did end up graduating. In fact, I ended up on the Dean’s list, Cum Laude, having presented multiple scientific posters, attended a national scientific conference in which I presented at, and I have a paper that is currently in review to be published in the Rutgers Undergraduate Journal of Biology.
So, here is some advice I have that will hopefully help someone out there struggling with pain.
Practice excellent time management
While it is vital for everyone in academia to have good time management, having a chronic illness such as pain means one must learn to plan accordingly. What do I mean by this? Well, due to the unpredictable nature of chronic pain, it is of utmost importance to stay on top, and if possible, ahead of all assignments, studying and tasks.
Chronic pain can be overwhelming, and so too can academia. To help with this, I found breaking apart my assignments and studying into bite-sized micro tasks really helps. I create mini deadlines for myself and do my best to stick to them. While the actual assignment may only have one due date, I may assign in 6 miniature due dates. Otherwise, it is too easy to put things off until the last minute.
Procrastinating is a risky gamble when you have chronic illness. You never really know when a flare up will occur.
Have multiple “pain kits” for yourself
In a drawer next to by bed and couch I would keep supplies ready. When pain strikes while you are trying to make a deadline, you’ll thank yourself for having things handy such as:
- Heating pad
- Pain Cream or Gel
- Snacks- both salty and sweet. Trying study and being hungry but hurting too much to get yourself food makes it even more difficult to focus
- Pencils, pens, and highlighters
- Paper with a clipboard or a notebook
- Compression gloves to use when your hands ache
- Pillows and blankets for when no matter how you sit or lay it feels like you are on a pile of rocks
- Extra medication
- Earphones to listen to music to help distract yourself from the pain
- Aromatherapy such as roll-on essential oils- I found that scents such as lavender, orange, and eucalyptus help me with anxiety, and sometimes even ease my headaches
- Dry Shampoo- for when taking a shower is too much to handle, but your hair is bothering you
- Chapstick- for dry or cracked lips, because when I’m stressed, I tend to bite my lips
- In the Freezer, I always keep multiple Ice packs and eye masks ready for when inflammation or migraines flare
Plan and organize instead of procrastinate and stress
Before the semester begins, decide how you are going to keep track of all commitments. Do not wait until the semester has already begun! This is because it’s a good idea to write down all of your doctor appointments, treatments, infusions, and so on in the same place that you will be keeping track of your coursework in. Many specialists are hard to get into, and schedule months in advance, so it is crucial that you map out when you have inflexible appointments and treatments as soon as possible.
Some professors will send out the syllabi before the semester even starts, which means you can get a head start on planning. Either way, as soon as you get your syllabus, write out all of your due dates, quizzes, exams, presentations, etc. for all classes in a calendar/planner.
For example, when I get occipital nerve block injections in my neck, which help to prevent migraines, it puts me out of commission for the rest of the day. So, If I have injections on Thursday and an assignment due Friday, then I would try getting the assignment complete by Wednesday at the latest.
Communicate With Your Professors
If any of your coursework falls during the same time as an immovable medical appointment, reach out to the professor IMMEDIETLEY. Do not wait until last minute to tell your professor if you have the option of telling them within the first week of class. Be respectful of both you and your professor’s time.
It is up to you whether you disclose any of your health condition with them, so you do not have to give them the exact details, but it is up to you to communicate with them about possibly rescheduling things.
Keep paper trails now incase of gaslighting later.
Have it in writing (so an email is ideal) that you communicated with your professor at the start of the semester. There are multiple reasons for this. Your professor is human just like you and may not remember, so it is always good to be able to refer to later.
Having a “paper trail” also protects you if you ever run into problems down the line. I have had some wonderful professors who were more than willing to work with me and my pain, but I have had others who could have cared less.
Knowing When to Rest
Acknowledge that you will have days where the pain “wins” and try to allow for wiggle room in your schedule for the days you can’t get out of bed. Pain does not care about convenience, or our grades, or deadlines. No matter how hard we try, there will always be days where there is nothing more you can do but rest.
But remember, resting is NOT doing “nothing”. It is actively listening to your body so that you can accomplish great things later.
In academia, we’re all too familiar with the phrase “publish or perish”. Unfortunately, this is just one of the prevalent toxic mentalities running rampant throughout the STEM fields. But this toxic productivity culture of academia does not have to define you, and it is slowly starting to change.
To Disclose Or Not To Disclose …. That is the Question.
Choosing whether or not to disclose your chronic pain (or any health-related issue) to potential or current employers is a deeply personal choice. With an invisible illness such as chronic pain, there may be no outward signs.
Legally, potential employers are not allowed to discriminate against a person due to their health. But in the real world, it is unfortunately a risk you are going to have to decide to take or not. Either disclosing or not both come with inherit pros and cons- it will never be completely clear cut in terms of what the right decision will be.
Here is a link to a fantastic article written back in 2005 by Dr. Irene S. Levine, published on ScienceMag titled “To Tell or Not to Tell: Coping With Chronic Illness as a Science Trainee”.
Encouraging & Supporting Scientists, Scholars, & Research Trainees With Chronic Pain
So what can Labs and PI’s do to support their scientists and research trainees with chronic pain (or other illnesses)? I have been on both ends of the spectrum when it comes to support- I have had the most understanding, caring, and empathetic environments as well as ones that made me feel as if I truly did not belong. Drawing from those experiences, below I’ll describe some ideas that can be implemented to foster more inclusive, and accommodating lab environments.
Print out Procedures and Protocols
A common occurrence in people who have chronic pain is experiencing what is referred to as “brain fog”. Brain fog is incredibly frustrating, as it makes a person lose their train of thought. When possible, have printouts of different experimental procedures available. It can be embarrassing to have to ask for them if they even exist, but they are extremely useful when in the middle of brain fog because it helps if we can keep track of what comes next and what we have already done.
Never make assumptions based on appearance
If you have a scientist or research trainee who has disclosed that they have chronic pain, keep in mind that it may not always be noticeable to you when their pain levels are high. As a young scientist, we often feel as if we have something to prove, and so we may try to just “grin and bear” it through the pain.
Many lab facilities have equipment or meetings on different floors within a building. If you are going to another floor, ask us if we want to take the elevator or stairs instead of assuming that we are fine with walking up and down the stairs. This seems like a tiny thing, but to us it could mean the difference between a flare up or manageable pain day. I know that science is a fast-paced environment but taking the time to use an elevator won’t take up that much of your time.
There have been so many times where I have been with my entire lab group, and everyone took the stairs and walked incredibly fast no matter what. I remember trying so hard to shallow my breathing on days where my asthma was acting up because I foolishly was worried about seeming “out of shape” (a problematic term in itself, but I digress). I would go to the restroom and quickly use my inhaler out of sight and using toilet paper to dab the sweat from my brow, as if I had something to be ashamed of.
Think Before You Speak
Avoid saying things like “You can take the elevator if you want, but I am going to take the stairs to get exercise in”. I know that it seems like an innocent statement, but to those in pain it is a stark reminder of our limitations. Yes, many of us could take the stairs, but we will pay for it later. When I did choose to use the elevator, I sometimes felt left out or burdensome when the entire group still decided to use the stairs.
Lead By Example (Practice What You Preach)
Make it clear to everyone that breaks are not just available, but encouraged and feasible. If we never see you taking a break, then how could we being low on the proverbial totem pole feel comfortable with taking them ourselves? With the go-go-go nature of academia, it is easy to lose sight of the importance of mental and physical well-being.
I highly recommend reading this great article “Employers, don’t tell us to take breaks if we can’t” written by Dr. Adam Ruben, who is a noted science writer, communicator, and biologist. It discusses the problems stemming from “faux- altruistic” reminders of self-care. One of my favorite messages in his article is “Universities and employers, please stop telling scientists to prioritize recreation while simultaneously expecting a level of productivity that makes it unrealistic or inadvisable to do so”.
The lack of breaks is a real barrier for those with chronic pain, and it can lead to both burn-out, but flare ups in pain that could have been prevented.
The Problem With Taking Attendance For Class
With the unpredictability of pain, know that you are going to end up missing classes, so just be aware of this. Some professors take attendance as a grade. Typically, it is just a couple of points, but I have had a few classes where it made the difference between an A or a B.
While you should always check to see if you can make up the points elsewhere in the class, it is important to note that rarely have I had a professor actually agree to letting me do any sort of extra credit, saying it would be “unfair to the rest of the classmates that were dutifully in class”.
The Uncaring Professor
Unfortunately, not all professors or PI’s will be understanding, and some seem to go out of their way to make it difficult to get accommodations, especially if you are not technically “protected” through disability.
For instance, I applied for government disability around 4 years ago, and was denied on the grounds that I am, and I quote “about well enough to work”.
University “Accommodation” services… or just more barriers?
Universities typically have their own form of disability, and you can go through the school to get accommodations. The issue here is the time it takes to actually receive those accommodations. Not to mention, having to get “official” accommodations requires us to put out even more energy that we simply do not have. It means extra paperwork, extra appointments, and extra time lost.
I’ll be writing more in the future about having chronic pain and ways to support those with pain in science and academia, so stay tuned for more!
Having any chronic illness and being a young scientist are terrifying enough on their own, so below I below are links to two great articles I came across about some of the challenges of having chronic illness as a science trainee/ scientist.
1)“When sickness interrupts science” How to balance a long-term illness and a research career.
2) “Chronic Illness and the Academic Career” The hidden epidemic in higher education.