“Is that an acne medication?” she asks. My eyes fall to the crusty cap, the deformed tube, and the label striped across the thick of its body with a name too thorny and unwieldy to produce on the average tongue.
The bald patches on the back of my head cringe and cower.
“No, not really. It’s kind of like an ointment for my skin,” I reply. A good start, I think. That is, until I have to pull my hair back and use the medication. I wait until my roommate’s speculation fizzles out to apply the corticosteroid, only she continues to stand beside me at the other sink. Carefully, I squeeze out a pea-size amount of the ointment onto a Q-tip and sweep aside what hair covers the bald spots on the back of my head. My roommate stops her skincare routine.
“What is that?” she asks. I can only assume she is referring to the crater of bare, peachy, acne-prone skin.
“I have this thing,” I begin, but the words are sandpapery on my tongue. I hate this part—the explaining, the look of pity, the confusion, and even at times the blatant disgust, as if the person I’m talking to is the one partially balding just by looking at my spots.
“An autoimmune disease,” I continue. But the worst part is not the explanation; it’s the sugar coating. Somehow, it is always my responsibility to downplay my experience in order to alleviate others’ discomfort.
These interactions always hug the contours of a familiar framework, amounting to something synonymous with: “It’s really not that bad” or “It’s okay because…” This instance is no different; I can feel the lines tickle against the roof of my mouth.
By definition of the dermatology community, alopecia areata is a relapsing form of baldness that ranges in severity. It stems from the attacks of overactive cytotoxic T-cells on hair follicles and is reinvigorated by stress and other environmental factors. In my case, the autoimmune disease manifests as coin-shaped bald spots. Others I know have lost all of the hair on their scalp. Many have lost even more.
I was diagnosed with alopecia areata at the ripe age of eleven, so I have a bit of experience navigating these conversations. Even so, experience never fully erases the urge to avoid them. Oftentimes, these encounters leave behind a smear of unjustified repulsion and awkwardness.
As someone who (begrudgingly) cares deeply about how others perceive me–and as part of a society that perpetuates unrealistic beauty standards–I often let my disease mold and define who I am. I used to hate seeing myself in photos, reverting to a half-up, half-down style. I never let people braid my hair, for fear they would graze the bumpy skin where hair should be.
With time, the management became more comfortable as the people in my life developed a fuller understanding of my situation. But (cue sound effects), one big, scary monster continued to hover over my shoulder: the transition to college.
With a semester now under my belt, I have gained some important tidbits that may prove helpful to young patients undergoing a similar lifestyle change: moving to a new atmosphere.
1. A lot of people like to think of your disease as a one-time instance: keep reminding them it is not if you have to.
I know so many individuals who try to empathize or relate to me by saying things like: “One time I was so stressed I also started to lose hair.” I never am sure how to respond.
“Sorry to disappoint, but my hair loss is a product of autoimmune dysfunction. Sure, it can be worsened by stress, but even if I were stress-free, these spots would still be here.”
Seems like a mouthful, right? And a little blunt? Bottom line: who cares? You can keep reminding people about your illness without being “mean.” If they do not want to learn and understand, that is on them.
2. Social scenes can be stressful: focus on mitigating, not necessarily avoiding.
On top of alopecia areata, my hypothyroidism and unresolved gastrointestinal issues make finding food difficult, especially given how many social scenes revolve around food. I like to come up with some easy excuses that work for dodging a food-related social dilemma while alleviating awkwardness.
This may seem contradictory to the last tip. For those that cannot muster the courage to confront and address a situation such as those outlined above, this tip is for you. Although this may not be the greatest long-term solution, it works, to put it plainly.
The unfortunate reality I have discovered is that using excuses such as “I already ate” are much more palatable than listening to a string of medical terms. As mentioned, people do not see chronic illness for what it is: chronic. Just because I cannot eat a slice of pizza at one social gathering does not mean I can eat one at a different social gathering. As much as I wish it could disappear, and while there are undoubtedly “good” and “bad” days, chronic illness is my long-term foe. Whether you choose to explain or mitigate by using simple excuses, the choice is yours.
3. Yes, you are starting over. Maybe that is not such a bad thing.
In all my time at college (granted, a single semester), I have only seen one bald girl on campus. As her and her friend were walking to class, I observed the unbridled laugh she let loose, the stylish way she dressed, and most noticeably, the lack of a hat or wig she could have donned. She was confident, to say the least.
It may be cliché, but what if having to start over is not the approaching doom people so often make it out to be? People like to treat hair like clothing—they style it, change its color, and add clips, headbands, hair ties, and more. Hair is inevitably a form of self-expression. Why should the lack of it dictate one’s confidence?
I am not here to counsel, as I am no authority on this subject, nor do I have all the answers. Everyone’s experience with chronic illness is different. The takeaway is about navigation, not solution. It can be so taxing to go through the introductions, the explanations, the cumbersome silence, and the confusing reactions of sympathy that seem to come with each new person you have to explain yourself to. All I am saying is that while new environments may encourage the stress, awkwardness, and self-loathing to take root again, they may also be a space for self-exploration and newfound confidence.
