Note: I have been a bit apprehensive about posting this piece. The tone may strike as a contrast from my typical upbeat stories, but it’s just not everyday that I get hit by a beer bottle while running, spontaneously cross paths with inspiring individuals, or develop a guiding life mantra! I initially created this blog to share my active adventures while living with chronic illnesses, and I feel that accurately depicting the daily struggles of dealing with autoimmune conditions is imperative. I promise that my next post will be more cheerful, but in the meantime, I hope you enjoy a raw look into my mind.
American parents are notoriously known for making their children feel special. They truly believe, and instill in the minds of their offspring, that they are different from the rest, outstanding, exceptional. But there are some realms where being special is a curse rather than a blessing. The medical field is one of them. Throughout the past several years, I have been told by countless distinguished physicians that my body is “very interesting,” that my medical history is “quite strange,” and that I am “unique…more unique than most.”
While I do hold an enormous appreciation for research, tremendously value the heartfelt relationships I have developed with my physicians, and am glad to ignite their intellectual curiosity, perplexing the University of Chicago’s most decorated doctors certainly has its costs. Comorbidity is the norm rather than the exception when it comes to illness, but I take that to an extreme. If I was just a “typical” patient- one with diabetes who responded to insulin in a predictable manner, one with food allergies who reacted moderately, or one with a defining set of connective tissue disease symptoms, rather than symptoms from a variety of clusters- my medical trajectory would be fairly straightforward. But I am unique. My conditions are labeled “undifferentiated,” as they do not fit a presently defined syndrome. My hematologist suggested that I attend medical school and try to study individuals like myself, whose autoimmune systems have gone awry. I appreciate her confidence in my scholastic ability, but no patient wants to be told to go find her own cure far into the future!
Most of the time, I am able to maintain a relatively positive attitude- focusing on what I can control and pleading that my body cooperates. But sometimes I just cannot stand feeling that my body is constantly fighting against me. I exercise for a minimum of 90 minutes a day and weigh 97 pounds when I wake up, yet I often get so bloated throughout the day that children ask me if I am pregnant. I rarely eat dessert, and when I let myself have a treat, my blood sugar skyrockets so high, becoming pretty much unresponsive to repeated insulin injections and leaving me feeling quite ill. When I wear a dress on the train to work, I get an itchy red rash on the back of my thighs from the seat, perhaps due to some residue of food I am allergic to. So I often do feel angry, but then I get mad at myself for feeling this way. I have a loving, supportive family and have had a very successful college career. While many adolescents are stuck in the hospital, I am out living an active life. I should be grateful; these thoughts of anger are absurd.
But every now and then, my conflicting emotions are validated. While reviewing an extensive array of symptoms at a new rheumatologist last week, the fellow remarked, “Any symptoms of anxiety? Depression? I mean, how could you not!” The next day, at my annual checkup, my pediatrician took a break from thinking about my puzzling body to discuss my plans to pursue a Ph.D. in clinical psychology and future career goals.
“So what’s the secret? How do you do it?”
“Do what?” I asked.
“All of it. What keeps you going? Most young people who have grown up with chronic illnesses have given up by now.”
I do not think either of these people intended to induce so much emotion, but I was crying the whole ride home. I cannot pinpoint why, but I have felt a plethora of conflicting feelings in the days since. Frustration at the voids of modern medicine. Anger at the seemingly impossible feat of attaining mind-body harmony. Grateful for the resources that have allowed me to cope relatively successfully. Miserable for all those children and young adults who have fallen victim to their illness. Most of all, though, validated.
That night, the suggested intention in my yoga class was, it doesn’t get easier; you just get stronger. I felt as if the teacher had read my mind. My body is exceptionally unique, and my chronic illnesses will not relent. They will continue to throw me physical, social, and mental curveballs for years to come. There will be good days and bad days. I can work towards accepting that. Unless some miraculous medical discoveries are rapidly made, it will not get easier. But I will continue to get stronger.