In forging identity and interpersonal relationships, Gwen’s heartfelt inquiry frames her connection to the unpredictability and unseen toll of chronic disease.

When you’re first diagnosed with something that has no cure—something that will be a part of you and inside of you forever—life can begin to feel quite binary. There is the period of time before the diagnosis and the period after. The old you and the new you. There are the sick and the healthy. The people who stay and the people who go.

At 21, I was diagnosed with alopecia areata, a chronic autoimmune condition where you typically lose round patches of hair. My identity in those first few months after my diagnosis was tied to the symptoms of my illness. I became alopecia areata. I was my patchy bald spots. I struggled internally to be defined as more than that, but no matter how much I reminded myself of all the other parts of me—my mind, my personality, my community—my identity always felt consumed by the alopecia.

People often compliment your strength, resilience, and bravery when you are sick. Even though all these qualities were part of who I was before my diagnosis, after it, they were suddenly and perversely put on display. I never wanted to have to be those things, but I was non-consensually thrust into a position where I was made to be strong, resilient, and brave. I never asked to reconstruct my visual and internal identities, but when I was sick, everything about my identity was reconfigured in relation to that sickness. Both sickness and strength became omnipresent and inescapable parts of my own self-perception.

Sick is an adjective, but if you’ve ever been chronically sick, you know it’s more of a verb. You are not stagnant in sickness, but rather, you are being sick—this sickness has a persistent motion to it. That motion can make loving difficult.

Loving through this motion is hard. Being sick not only destabilises your current sense of identity, but makes future ones equally uncertain, dependent on how your illness might progress. Although ‘progress’ may imply linear movement, in sickness, progress can be chaotic. My alopecia areata was chaotic and rapidly spreading. I never knew if it would progress to alopecia totalis—in which I would lose all the hair on my head—or alopecia universalis—where I would lose all the hair on my entire body. That uncertainty was hard for me and the people that I love. 

Alopecia areata, totalis, and universalis can be easily dismissed as superficial illnesses because people assume the only thing you lose is your hair. But hair gives status, security, acceptance, sexuality; especially for femme-presenting people. Across cultures and societies, hair communicates and means so many things to us—it’s never just hair.

Alopecia areata is sometimes described as a disfiguring disease. I always thought describing it as a disfiguration was gruesome, but perhaps it captures the significance of what losing your hair so suddenly can mean for your identity.  

When you’re the one being described as disfigured, though, it can be hard to feel self-love. It is hard to accept that you don’t know how you will look tomorrow or a month from now. And to love someone who is actively being disfigured is to love someone who is actively grieving the self before the diagnosis. It can all feel like a love endurance test.

Would you still love me even when hair falls out by the handful? Would you still love me even if my face swells from the steroids? Would you still love me if I was bald?

Asking these questions as someone with alopecia areata is a way of seeking affirmation that the person you’re with loves more than just your physical self. It can feel vapid to ask these questions or to even have these insecurities. People tell you that you’re still the same person on the inside, but I’m not really sure that that is true—this type of Cartesian mind-body split was never convincing to me. Through all these changes, I might not be the same person that they loved before. And so, as someone who is sick, I need to know, do you still love me?

People will leave after a diagnosis. Even if they don’t know you were diagnosed, the physical changes are difficult to hide, and people see those changes. Some acknowledge them, but most choose to ignore it because we don’t know the right words and ways to speak to people about these topics. That’s a challenging reality. Like everything else, I attributed people leaving or fading away from my life to me being sick—it became the convenient rationale for things.

What can sometimes be more challenging to accept and realise is that there are also people who stay in your life. These are the people whom I feel immense love toward and who have shown me what loving looks like even through difficult diagnoses.

Love looks like arranging hearts from my fallen hair. Love looks like rubbing Rogaine on my bald patches in university bathrooms. Love looks like sending me homeopathic recipes and boxes of essential oils. Love looks like treating me like me even when I have a hard time recognising myself in the mirror.

To love through alopecia areata is to love through coping with the diagnosis and the potential regrowth and loss. I know how precarious and fragile it is to attach my own self-worth and identity to my hair or any other physical characteristic, but what is scary is being unable to know or control how others see and find value in you. In love—partnerships, friendships, and kinships—uncertainty is a part of that bond. Alopecia areata, or possibly any rapidly progressing illness, tests that. We can be romantic and idyllic when we think about love standing the test of time and illness, but the truth is, not everyone will check your bald patches on the weekends and hold your hand at support sessions. The fear that people will leave when I become sick and my hair falls out again will always be there, but that is what makes the moments and memories of love so precious.