What They're Missing

Alopecia has a ripple effect. First and obviously, it affected me. I lost my hair, I suffered trauma from that which has yet to be fully dealt with, I have to grit my teeth and face the world bald every day.

From there, my immediate family has been affected. Two examples: first, on the night we discovered the Photo Booth app on our iPad, my husband and I were sitting on the couch with his sister and brother-in-law, and we were trying out all the funny distortions. My bald head standing out so brightly as we pointed the camera at ourselves was just too much for me to take. I couldn't look at the pictures. Then, of course we had to do the funny kaleidoscope effect, so the image of my white skull was multiplied and magnified. And I was...horrified.

The other example is not an event but a realization. Scrolling through Facebook today, I saw that many friends of mine took Easter family photos and posted them over the last few days. My husband asked why we didn't take one. Now, I'm not the kind of person whose mind immediately goes to "Let's take a picture" whenever there is an occasion to dress up or a special event happening. But since I lost my hair, the idea of a family photo instills a little fear. How will I look? Will I ruin the picture, either because my head is so white and unnatural-looking or because my scarf doesn't fit the occasion? On Easter Sunday I wore a cute new (from a secondhand store) yellow lace dress with a navy cardigan and navy flats. I was so excited to have put a new Easter outfit together, for the first time in years, that I forgot to plan what I would wear on my head. On Easter morning, it hit me that I had no scarves to match my outfit. I really didn't want to wear a wig though, because I had to be up front at church and I didn't want people to be distracted by the fact that I suddenly had a great head of hair. I settled for a beige scarf that didn't match at all but didn't clash so bad that it hurt the eyes to look at.

But now our family has no Easter photo to post. There are a lot of family photos we haven't posted because I don't want to be in them.

Moving outward, my alopecia has affected extended family and friends, largely for the reasons mentioned above. But also, as the ripples spread out concentrically, every person I come in contact with is affected by my alopecia because it is confrontational. It forces people to hesitate when they regard me, trying to decide whether or not to ask about my scarf or bald head. It gives people pause when they begin to talk about their bad hair days or the celebrity whose hair they envy. It makes people uncomfortable, even if to a very small degree and even if only for a brief moment.

I have, for a long time, wanted to keep the pain of this disorder for myself. My alopecia has been mine alone to suffer from. I have denied those around me the opportunity to voice what they have lost or felt because of this thing that happened to me. But I think it might(?) help me to allow others to come inside my grief bubble and sit with me. It may be easier to get out of it with the strength of a crowd.