{"id":3102,"date":"2019-09-06T08:13:54","date_gmt":"2019-09-06T08:13:54","guid":{"rendered":"https:\/\/www.editage.com\/insights\/a-day-in-the-life-of-a-grad-student-with-an-invisible-chronic-illness\/"},"modified":"2025-01-15T06:32:52","modified_gmt":"2025-01-15T06:32:52","slug":"a-day-in-the-life-of-a-grad-student-with-an-invisible-chronic-illness","status":"publish","type":"post","link":"https:\/\/www.editage.com\/insights\/a-day-in-the-life-of-a-grad-student-with-an-invisible-chronic-illness","title":{"rendered":"A day in the life of a grad student with an invisible chronic illness"},"content":{"rendered":"

As a grad student with an invisible chronic illness, I have both the luxury and the misfortune of being able to blend in with everyone else. I go to the same classes. I sit in the same seats. I muddle through the same research. But behind the scenes, I fight silent battles that no one else knows about.<\/span><\/span><\/span><\/span><\/span><\/p>\n

I live with several conditions including myalgic encephalomyelitis (ME), chronic pain, and <\/span><\/span><\/span>PANS<\/span><\/a><\/span><\/span><\/span><\/span><\/span>; with all the mental illnesses that accompany it: obsessive-compulsive disorder (OCD), anxiety, depression, attention deficit hyperactivity disorder (ADHD), and more. So if my body isn\u2019t acting up in some way, it\u2019s entirely possible that I\u2019m still struggling mentally, or vice versa, or maybe everything is flaring up all at once. Sometimes, it feels overwhelming, but after years of being sick, I\u2019ve learned to function quite well.<\/span><\/span><\/span><\/span><\/span><\/p>\n

I\u2019m lucky to have supportive friends\/colleagues and a sympathetic advisor, but until you\u2019ve lived with a chronic illness yourself, it would be impossible to completely understand all of the struggles I face and the tough decisions I have to make just to get through a day. However, chronic illness is surprisingly common, so if you don\u2019t have one yourself, there\u2019s a good chance that someone you know does. But perhaps you can get some idea of what people like me face by taking a peek into a typical day in my life\u2026<\/span><\/span><\/span><\/span><\/span><\/p>\n

My day doesn\u2019t start until at least 8:30 AM, because I need more sleep than your average twenty-four year old. And as soon as I wake up, I\u2019m already in pain: my hands are swollen stiff, and my usual headache has already begun\u2014I\u2019ve been too busy to make it to the chiropractor in the last week, and now I\u2019m paying for it. It takes a few minutes to convince myself to get out of bed and face the day, but I\u2019m finally motivated, knowing I have an assignment due in four hours that I\u2019ve barely started.<\/span><\/span><\/span><\/span><\/span><\/p>\n

I stumble over to my micro fridge and then heat up some leftover eggs, worrying the entire time about how I could possibly get everything done in time for class\u2014while simultaneously scolding myself for procrastinating once again.<\/span><\/span><\/span><\/span><\/span><\/p>\n

I live on-campus in the dorm located a block away from my lab, and there\u2019s a cafeteria downstairs. Yet, I rarely make it there for breakfast. In fact, I barely make it there at all for a couple of reasons.\u00a0First, my food sensitivities mean it can be difficult to find anything that I can eat when everything is full of gluten and heavily processed ingredients.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Second, due to ME, I have an extremely limited energy budget that I have to use for an entire day of grad school; even going downstairs at the beginning of the day sometimes takes up more energy than I can spare.<\/span><\/span><\/span><\/span><\/span><\/p>\n

And so, leftovers it is, once again.<\/span><\/span><\/span><\/span><\/span><\/p>\n

After swallowing the fistful of pills that keep me functional, I realize I\u2019m down to the wire and have no time left to procrastinate\u2014so, of course, I have to have a panic attack now.\u00a0\u00a0<\/span><\/span><\/span><\/span><\/span><\/p>\n

All too often, I get into a feedback loop where my ADHD makes me lose track of time and procrastinate, while my anxiety already makes it hard to get work done because I\u2019m afraid it won\u2019t be good\u2014and then putting off my assignments makes me more anxious because I have so little time left, and then it\u2019s even harder to concentrate!<\/span><\/span><\/span><\/span><\/span><\/p>\n

After collecting myself, I now have exactly an hour to write an entire report. This day might finally be the first one, in seventeen years of school, when I fail to turn something in.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Nevertheless, being able to churn out a thousand-word paper in half an hour is a perk of having a secret second career as a writer. But, I\u2019m kicking myself knowing that the ADHD has made me work under these stressful last-minute circumstances once again. Why do I keep doing this to myself?<\/span><\/span><\/span><\/span><\/span><\/p>\n

By 12:20 PM, class is in ten minutes, and I scramble to pack up my things and print out my paper as I walk out the door. I\u2019m going to be late\u2026 But did I really unplug my hair iron? Did I really print out the right assignment? Did I really remember to lock my room? I\u2019ve already gotten to the elevator, but my OCD worries get the best of me, and I have to turn around and go check everything again, just to be sure.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Somehow, I make it to class right as the lecture is about to begin.\u00a0Even though today is my favorite class, I\u2019ll be fortunate if I can pay attention for even one-third of it, and I know I\u2019ll have to go home and reteach myself everything. If it\u2019s not my ADHD making it hard to focus in class, then it\u2019s my pain.\u00a0 And if it\u2019s not my pain, then I\u2019m fighting OCD intrusive thoughts. Not to mention that another one of my symptoms from PANS is tics. And if it\u2019s getting close to the time for my monthly IV infusion that keeps it all at bay, the tics will start up again\u2014and then I have to concentrate on suppressing them in order to not involuntarily say something random in the middle of a lecture (by the way, despite the stereotype, the vast majority of those of us with Tourette\u2019s don\u2019t yell obscenities.).<\/span><\/span><\/span><\/span><\/span><\/p>\n

By 1:45 PM, I have to stop by the lab and set up something for my assistantship supervisor. We\u2019re meeting tomorrow, and I\u2019m going to get in trouble if I don\u2019t finish this\u2014but I\u2019m already worn out enough from class and writing this morning\u2019s paper that I feel like I should sleep. But if I make the trip home to get some rest, I\u2019ll then have to make another trip back to the lab later\u2014which would take most of my remaining energy. And so, I have to push through and get this done now so I can have the whole evening for myself.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Although everyone has limits, and grad school can be exhausting for anyone, with my ME, the stakes of overdoing it are higher, and my limits are lower. Whenever I exceed my energy budget, my symptoms will flare up within a couple of days: it will be like I have the flu and a brain full of mush for up to a week afterwards. This is what we call a \u201ccrash,\u201d and it means spending a few days in bed and not being able to think clearly enough to get anything done.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Therefore, each day is a series of energy calculations and a game of weighing costs versus benefits of any given task. I know that pushing through and going to the lab may very well result in a \u201ccrash,\u201d but I know it\u2019s necessary, and it\u2019s about to be the weekend. Plus, I conserved a lot of energy yesterday, so I have a little more than usual to spare today. I might not crash after all, but if I do, I have a few days to recover before next week begins.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Despite all of these struggles, for me, the hardest part of having a chronic illness in grad school isn\u2019t dealing with academics, it\u2019s the social isolation. I have just about enough energy for getting through a day and taking care of myself enough to keep the worst of my symptoms at bay. It\u2019s rare that I have the energy to go to big social gatherings or concerts or shows or anywhere more than ten minutes away. When I do go out with friends, it\u2019s just for a couple of hours to the bar a block away, and my alcohol intolerance means getting a club soda\u2014and then I\u2019m home by 10 PM.\u00a0\u00a0<\/span><\/span><\/span><\/span><\/span><\/p>\n

I spend so much of my time alone in my dorm, just resting and conserving energy so that I can get through each week. Sometimes, I wonder if it\u2019s worth the social sacrifices, the constant planning, and the relentless anxiety it takes to be in grad school with my conditions. Sometimes, I wonder if academia simply isn\u2019t the place for people like me\u2014people who have a malfunctioning brain and body to contend with day after day after day.<\/span><\/span><\/span><\/span><\/span><\/p>\n

But then I realize that academia needs people like me.<\/b> As frustrating as it can be to live with my challenges, I\u2019ve come to see that being neuro-divergent and having disabilities has imbued me with insights and perspectives that not everyone has.\u00a0The brain that can\u2019t stay focused on a task and generates bizarre anxieties is the same brain that can see hidden connections and conjure out of the box solutions.<\/span><\/span><\/span><\/span><\/span><\/p>\n

Therefore, it\u2019s critical that colleagues and professors be aware not only of what they see I can do, but also of the unique struggles I face to make it happen. I don\u2019t want anyone to lower their expectations of me because of my illnesses\u2014but I do want the accommodations that could give me an equal chance to succeed.<\/span><\/span><\/span><\/span><\/span><\/p>\n

So if you know someone who lives with a chronic illness, whether physical or mental, ask them if there\u2019s anything they need. Ask how they\u2019re doing from time to time, and be willing to listen if they tell you the truth. Keep inviting them to outings even if they keep saying no, because they might finally feel well enough for it one of these times\u2014and we hate feeling forgotten and left out because of our limitations. And when you do invite us, think about making it somewhere nearby where we don\u2019t have to walk too far if we\u2019re not having a good day.<\/span><\/span><\/span><\/span><\/span><\/p>\n

But above all, just treat us like you would anyone else\u2014you don\u2019t have to say anything special when someone reveals their condition to you, and you don\u2019t have to constantly worry about us. Ultimately, we\u2019re just like everyone else, and we just want to be included and be seen in the same ways that you are.<\/span><\/span><\/span><\/span><\/span><\/p>\n

\n

This story has been shared by Iris Ainsley\u00a0<\/b>(@DreamingPanda1<\/a><\/span><\/span>).<\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

As a grad student with an invisible chronic illness, I have both the luxury and the misfortune of being able to blend in with everyone else. I go to the same classes. I sit in the same seats. I muddle through the same research. 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