Just for the record, I don't suddenly think that "putting it all out there" is the definitive right way to live with alopecia. I'm not sure I'm ready to do it myself, at least not 100%.
In defense of “hiding” alopecia … there are benefits to living like this, let’s not kid ourselves. The benefit in life of people getting to know you as a person before getting to know your medical issues. The benefit in your job of people seeing you and your work, rather than thinking about your hair. The benefit of not being looked at, stared at, pointed at, talked about, teased. The benefit of children not asking your kid about it, or your child having to navigate “defending mommy” when other kids naturally think wearing a wig is funny or weird. The benefit of feeling “normal,” whatever that means to you.
The issue here is simply the opportunity cost. What might one lose when prioritizing those (very real) benefits, and is it worth it?
I’m not sure about you, but the opportunity costs from my choice to conceal this have been both big and small. Here are just a few:
Never feeling the wind on my head
Closing the blinds obsessively at night or leaving them closed on a sunny Saturday morning so I can finally be “free” for a few hours without people seeing me – which impacts my entire family and anyone else in the home with me
Not wanting to take pictures of fun and precious moments in life if I don’t have my “hair” on
Tripping over my words when someone notices or asks me about my hair, because I haven’t owned it or prepared myself to talk about it honestly and matter of factly
Not exercising or taking good care of my body because it is just too hot and uncomfortable to get all sweaty with a wig on, and because I have feared things like my eyebrows rubbing off or sweating off more than I have truly feared heart attacks or old age
Holding back because of what others may think – declining adventures, refraining from joyful play with my son (at the pool, for example), saying no to trips with friends where they or others may see me (camping trips, girls’ weekends, beach trips, missions trips)
Through my actions and choices, teaching my son that hiding and holding back is an acceptable and even valued way of life. …Oof … this one hurt me the most to write and I am still stinging from actually putting that into words.
I feel at this point that the risks of silence and keeping up the façade all the time outweigh the benefits. Does this mean I will just whip off my “hair” and walk into my next job interview? Um, no, probably not! Does it mean that I need or want to have deep and meaningful conversations about hair, hair loss, and health with every stranger at the pool? Mmmm...not really. But I will also have to acknowledge and accept that it may happen. If I can’t accept it, I need to make a different choice.
I have valued my anonymity and there will be a cost to letting it go. I am not imagining that this is going to be easy. They say “old habits die hard” for a reason and hiding and craving anonymity is a long-ingrained habit for me. More than that, it has served me well in many ways. I am simply realizing that I can’t have it all – I have to choose. I have chosen the benefits listed above for over 20 years now, and I will miss some of them so very much. Still, I think now it might just be time to embrace the benefits I have forgone by making those choices. It’s time to try something new.