“Mystery Diagnosis” used to be one of my favorite shows—until I started living it. I sometimes joke that I am allergic to college because of the speed at which my health started to decline upon entering school. Within the first month, I was fighting increasing lethargy and fatigue. At first, I thought that my new late-night schedule was keeping me tired, or maybe my inability to maintain the 4-5 days a week workout schedule that had sustained me my senior year of high school. However, once I started having heart palpitations and shortness of breath during the relatively short walk to the cafeteria, I suspected that something was wrong. There was no way that my cardiovascular fitness had decreased that much after less than a month without consistent workouts. A few weeks later, my suspicions were confirmed when I started having night sweats.
The first time it happened, I had no idea what was going on. I woke up with a start in the middle of the night because I was shivering cold and, as I sat up in bed, I realized that not only was my over-sized shirt soaked, but my sheets and pillows were damp as well. When I got up to go to the bathroom so I could change into a dry shirt, I was horrified by how wet my nightshirt was. I literally had to wring it out over the sink and hang it in the shower to dry. But, since it was the first time, I wrote it off as a fluke and returned to my moist bed.
In the following weeks, this mid-night routine repeated several times: I’d wake up freezing cold to find myself and my bed wet, then I’d tip-toe to the bathroom to change into dry clothes. Of course, as these nighttime interruptions became a common occurrence, my concern grew: I’d previously viewed night sweats as something that only afflicted menopausal women. I decided to see my pediatrician, Dr. D, over Thanksgiving Break. Yes, my pediatrician. Even now, at 22 years old, I still see the same doctor I’ve seen since high school (and I intend to continue doing so until I reach the age limit in 4 years). Of the many doctors I’ve seen, Dr. D. is the best. She is always thorough; she knows all of my medical history, so I don’t have to start from scratch every time I develop new symptoms; and she is caring and compassionate and never insinuates that my physical pain is in any way imagined or exaggerated. But, I digress. That first Thanksgiving Break, Dr. D sent me to the lab for a TB test and some blood tests. Thankfully, the TB test was negative, and the blood tests only showed some moderate anemia. Being a young female, with a less-than-balanced-new-college-student diet, these weren’t terribly compelling results. So, Dr. D put me on an iron supplement and instructed me to increase meat and vegetable sources of iron in my diet.
Upon returning to school, I became an iron-procuring master. Hamburger patties and spinach salads were my staples in the dining hall. Despite my valiant efforts to increase my iron intake, my decreased energy did not improve. Moreover, the blood tests at my follow-up appointment over Winter Break revealed that my hemoglobin levels had not improved more than one-third of a point. After running more blood tests to confirm that I didn’t have some form of sickle cell anemia, Dr. D prescribed a higher dose of iron supplements and made plans to see me over Spring Break. Spring Break came and went; freshman year came to a close; I moved home for the summer to work at a preschool day camp; and, still, there was little improvement with my anemia. By the end of summer, when I went to Dr. D. for a back-to-school check-up, she was concerned enough to refer me to a hematologist. I was nervous—it was my first time going to see a specialist—but it made sense as the four daily iron supplements I was taking, which amounted to more than 400% the recommended daily value, had not helped.
I didn’t get to see a hematologist until the week I had to return to the dorms to begin my sophomore year. In those days, I asked my mom to accompany me to most doctor’s appointments, and, even though she never said anything, I am sure going to that particular clinic was hard for her. It was a hematology/oncology clinic, and one of her older brothers had recently been diagnosed with CLL, a type of leukemia. That first hematology appointment was a very different experience from those I’d had with Dr. D. By the time I’d described the symptoms that had begun this odyssey and the course of action that had already been taken, the hematologist barely had enough time to give me a lab order and set a date for the follow-up appointment. As I would soon learn, this was the norm for specialist appointments: trying to explain months of symptoms in fifteen minutes.
As I headed back to Baltimore to start my second year of college, I was nervous and excited. I was going to be living in the newest dorm on campus with one of my best friends, yet I also had a schedule pitted with challenging pre-med courses. If only I’d known that my body was preparing a storm of symptoms that would impact my friendships, academics, and ability to function in daily life. The first week of October, just before the first round of mid-terms were set to commence, the skin disease (which I would soon learn was called hidradenitis suppurativa, or HS) that had been a mild-to-moderate nuisance since I was 12 years old, completely stopped me in my tracks. To date, I have never been in so much pain…and that is saying something for someone who has now spent the better part of three and a half years in almost constant pain. Within a few days, I went from moderate discomfort to struggling to bathe and dress to needing to email my professors for extensions.
Eventually, after spending the entire night unable to even lie down, I decided to go to the ER. That first ER visit on account of HS, I cried. Thankfully, I had my best friend with me, and, even though we stopped speaking later that year, I am still grateful for her presence at my first ER trip. In the following year, I would make that trip numerous times. There were many occasions where I would put on a brave face, go to class, work, and club meetings before quickly walking to the ER (which, thankfully, was adjacent to campus), hoping that there would not be a long wait. Each time was a little easier. I went from blubbering, to wincing silently, to chatting with the doctor while he worked to drain the interconnected tunnels of abscesses characteristic of HS. Then, I’d call for a shuttle to take me to the pharmacy to fill my prescription, praying it would come quickly before I succumbed to the horrible grogginess, coupled with the long-awaited pain relief the Percocet they’d given me in the emergency room would no doubt cause and only time and sleep could alleviate.
After being discharged from the ER that first time, I prepared to make the three-and-a-half-hour trek back home to visit Dr. D. It was at that point that she officially diagnosed me with HS—seven years after my symptoms had first appeared. HS is a chronic skin disease that causes recurrent abscesses in areas that have sweat glands. Its exact cause is not known, although there seems to be a genetic component as it tends to run in families and to afflict those with autoimmune diseases, and there is no definitive course of treatment. I didn’t know it then, but that was the beginning of an unfortunate routine. From that point on, each break was punctuated by doctor’s appointments and medical tests. Every few weeks, I’d take the shuttle to the train station and make the journey back home for whatever appointment was scheduled because the insurance company refused to grant the exception that usually gave college students the ability to see out-of-network physicians since I was attending school in the neighboring state. Eventually, during my senior year, my out-of-state doctor’s appointments would come to an end when my parent’s switched to a PPO (a more ‘flexible’ insurance plan), but, for the time being, that train trip was a part of my routine.
When my parents dropped me back at my dorm after that life-changing, sophomore-year HS flare, I was feeling good. But, it was not long before I soon developed stabbing left-sided stomach pain that robbed what energy the anemia hadn’t already taken. I was constantly nauseated and rarely hungry, and I was spending most of my ‘free’ time sleeping. Naps became my signature survival tool. After class and work, I would spend hours napping before I was alert enough to sort of focus on my textbooks. My suitemates good-naturedly poked fun at my ability to fall asleep at the drop of a hat, but I really could not help it. Before that time, I had thought that fatigue was synonymous with sleepiness or exhaustion from too many late nights doing homework. It’s not. When you’re fatigued, it’s as though your body is struggling to perform the basic functions of breathing and pumping blood through your veins. Everything is a struggle, and keeping your eyes open, no matter how desirable, is just not an option.
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Weeks of unrelenting fatigue started to wear on me, and I started to fall behind in my classes. I had a decision to make. If I dropped my two most demanding classes, I would have time to rest while maintaining good grades in the classes I did keep; however, dropping courses would have long lasting implications on my ability to complete my pre-med requirements since the science courses I needed had to be taken in succession. Drop one or both of my humanities majors and switch to biology, or prepare to work my ass off in summer courses to complete my pre-med requirements? After agonizing over the decision, I accepted that I couldn’t keep up with my current schedule, so I met with the Dean of Students, who graciously allowed me to drop below the minimum credits usually required for full-time status rather than taking a medical leave of absence.
Distressed about my recent change in plans, I went home for the Thanksgiving holiday. When I followed-up with Dr. D, she was concerned about the stomach symptoms that had appeared since we’d last met, so she prescribed an anti-nausea medication, along with a pain medication, and set up an ultrasound appointment for the very next day. When the ultrasound didn’t yield any useful results, Dr. D suggested I see a gastroenterologist; so, I made a GI appointment for Winter Break. When Winter Break arrived, I had two appointments—one with the hematologist, the other with the new GI. Those two appointments turned into an endoscopy and colonoscopy, a CT scan, a battery of blood tests, and a struggle to schedule a bone marrow biopsy before I had to return to campus for the spring semester. Before I left home, I received a belated holiday gift: searing pain and swelling in my right ankle. As the spring semester progressed, so did the joint pain. From the right ankle, the pain, stiffness, and swelling spread to both of my ankles, my knees, and my hands. When I returned home for Spring Break—and the bone marrow biopsy that had taken almost five months to secure (and revealed that there was nothing to be done about my type of anemia short of a splenectomy, should it become life-threatening)—I had to ask my hematologist for a rheumatology referral.
Post-Spring Break, I adopted a gluten-free diet, as there was still a chance that I also had Celiac Disease like my younger brother, despite blood test results to the contrary, and that was the cause of my stomach pain. Sophomore year crawled to a timely end, and I hoped that my body would behave as I prepared to take the science courses I’d missed during the school year. The restricted diet didn’t help, and my body did not cooperate with the demanding, condensed summer schedule. To add insult to injury, I’d had to move off-campus at the conclusion of sophomore year, which meant much more walking than before. So, I reluctantly dropped one of the summer courses and packed my bag at the end of the first summer session and went home to wait for the rheumatology appointment I’d scheduled months before.
The arrival of that long-awaited rheumatology appointment brought the news that I had undifferentiated inflammatory arthritis (meaning the doctor’s couldn’t confirm if it was Rheumatoid Arthritis or secondary arthritis caused by my other diseases) at the ripe old age of 20. This unwelcome news added to the diseases I was already dealing with, which meant that junior year would pass in a blur of pharmacy trips, doctor’s appointments, and blood and medical tests. My skin disease was constantly flaring, resulting in frequent ER visits; I still hadn’t discovered the cause of my left-sided stomach pain, and I was on a low dose of a chemotherapy drug called methotrexate, which is commonly used to treat Rheumatoid Arthritis, in a futile attempt to curb my joint pain and swelling.
Junior year was when I really learned about the social implications of chronic illness. For one, I was no longer able to participate in an activity I loved: belly dancing, a craft I’d worked to hone for almost four years. Between HS and arthritis, there were many days that I physically could not do the movements—plus feeling nauseated all the time hardly made me want to shimmy. I tried to remain a member of the belly dancing community by attending haflas, but, while I enjoyed watching more experience performers, it was hardly the same as actively participating as a dancer. Apart from missing the physical activity, I also missed the companionship. I’d made several friends through my university’s belly dancing troupe, and, without the shared interest, it was hard to keep in touch. Of course, when you stop participating in some activity, people want to know why. And, when I responded that illness was responsible, people became awkward and silent and started to ignore my attempts to make contact.
Of course, awkwardness was the better reaction. In other situations, people responded with insensitive quips: “My hands swell in the summer, so I know how you feel,” when I stated that I had inflammatory arthritis, or “You can live without a spleen,” when I explained that the anemia that caused my breathlessness was not due to iron deficiency. Most twenty-somethings have limited experience with chronic illness, so it might make them uncomfortable—that I could understand. However, the lack of compassion and empathy was truly appalling. I wish people would understand that it’s okay if they’re uncomfortable, just don’t be rude. I would be more than happy to hear “Hey, I don’t really know what to say, but I care about you.” Unfortunately, that is not the natural response: Even the two roommates that I had lived with for three consecutive years never once asked me how I was doing, despite my sharing basic details about my illnesses.
To be fair, the lack of compassion was not limited to those who were strangers to chronic illness. My former best friend, who had been instrumental in my first ER trip, quickly dropped me to the wayside when she found a treatment that put her Chrohn’s Disease in remission just as I was beginning my battle with illness. I used to be very angry with her: how dare she abandon the person who spent nights in the hospital or made soups she could eat during severe flares? But, I no longer hold it against her. Dealing with chronic illness and learning how it fits into your life is an on-going progress, and it often changes as the disease flares and remits. That is one important thing that I have learned from those who had been chronically ill much longer than I have—it takes years to come to terms with the illness and learn how to not let it dominate your life. It is a very delicate balance. You have to let those in your life know you have a disease that impacts your life, but you don’t want to overwhelm them with the details. Fortunately, I now have two good outlets. I have a great friend, who also happens to be chronically ill and isn’t squeamish about the mention of illness, and I have a network of fellow arthritis sufferers, thanks to social media. When it comes to everyone else I interact with, I am still working on it, but it is a good place to start.
Ironically, while all of this social drama was taking place during junior year, I earned some of my best grades in some of the most challenging classes. Physically and emotionally, I was a mess: I was frustrated that I hadn’t received concrete diagnoses for all of my symptoms, and I was struggling to contemplate the long-lasting implications of being chronically ill. Yet, I was getting used to feeling poorly, and it seemed that being in survival-mode and learning that there were worse things than not getting an A+ had actually made succeeding in school easier. It was also helpful that my personal experiences overlapped with my coursework. During the spring semester, I took two classes—Medical Anthropology and Sociology of Disability—that help me articulate my thoughts and feelings about that way in which chronic illness impacts every aspect of life. It was a complete revelation to find that there were academic disciplines that studied the unique medical, social, and cultural implications of long-lasting illness and disability. This knowledge not only made me feel less alone in my journey to balance illness and life, but also changed how I wanted to pursue a career in medicine.
This past school year, my senior year, I, thankfully, did not develop any new diseases. I also didn’t make much headway in remedying those I already had, despite the additional colonoscopy, eight medications, and monthly laser treatments I tried over the course of the school year. Unfortunately, since graduating, my no-new-illnesses streak has ended as I was diagnosed with endometriosis, an autoimmune gynecological disease, in December.
Alas, I cannot provide a tidy conclusion. My journey is not complete, and I have no idea how it will end. If I have learned nothing else from my experience, I know that there are many circumstances that are completely out of a person’s control, yet can totally derail the best-laid plans. My illnesses are chronic: I will always have to deal with them. And, unfortunately, once you have one autoimmune or autoimmune-related disease, you are likely to develop more. All I can do is hope that I will find a treatment plan that will put most of my illnesses in remission.
In five years, I hope you will find me as a happy—or, more importantly, content—med student with stable health making strides toward her career goals. For now, all I can say is that I am still on the right track, trying my hardest not to let bitterness and the uncertainty surrounding my imperfect health prevent me from moving forward and reaching my full potential. Ultimately, I must use my past struggles as a motivational tool: I have had hard times, yet I have persevered.