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and so it goes...
It happened again, and why am I surprised? I'm currently collecting data for my dissertation and last week was faced with difficulties that are not research-related but alopecia-related. Something research supervisors can't really prepare you for...
I'm developing a career counseling group to motivate unmotivated high school students to engage in career exploration. During one of the group sessions last week while exploring each participants' individual strengths and characteristics, the group quickly deteriorated into jokes and comments about one of the participants and his early balding. Keep in mind he's 17... and hardly balding. It became clear to me that these boys were in fact talking about me, but were probably too embarrassed, awkward, or immature to actually ask me about my alopecia. Instead they resorted to making fun of each other to deal with their anxiety. I was so caught off guard during the group, and so focused on getting my research done, that I felt paralyzed in this moment and was unable to say or do anything, except allow them to continue to make jokes. I eventually made a very minor comment to the boy about how it could be worse - trying to show them that I could be sarcastic and open about my appearance, but I think the comment ended up making everyone more awkward...
What really shocked me though was my own reaction to this event once the group ended. I spent a lot of time thinking over the weekend about what happened and why I gave up my power so easily in this group. Why did I just sit there and not say anything? Why didn't I explain my alopecia to them when I first met them? Why was I so surprised that this happened? And through all of this thinking, it occurred to me that I've been trying to "pass". I've been telling myself and trying to tell others for years (probably all of my life) that I'm no different from anyone else, that I can do everything that everyone else does. And so the comments from these boys shook me out of "passing".
So in reality, "I'm no different from anyone else" simply isn't true. Yes I can achieve the same things as others, but I am different, and I need to remember this. Not so I can think of myself as "less than", but to empower myself to make decisions and act in ways that are consistent with who I am and how I need to navigate situations. My process of getting to where I want to be will always be different, because of my alopecia. And this isn't a bad thing, but it does mean that I need to start being more honest with myself and stop trying to be "normal" or "average", whatever I think that means anyway.
I'm developing a career counseling group to motivate unmotivated high school students to engage in career exploration. During one of the group sessions last week while exploring each participants' individual strengths and characteristics, the group quickly deteriorated into jokes and comments about one of the participants and his early balding. Keep in mind he's 17... and hardly balding. It became clear to me that these boys were in fact talking about me, but were probably too embarrassed, awkward, or immature to actually ask me about my alopecia. Instead they resorted to making fun of each other to deal with their anxiety. I was so caught off guard during the group, and so focused on getting my research done, that I felt paralyzed in this moment and was unable to say or do anything, except allow them to continue to make jokes. I eventually made a very minor comment to the boy about how it could be worse - trying to show them that I could be sarcastic and open about my appearance, but I think the comment ended up making everyone more awkward...
What really shocked me though was my own reaction to this event once the group ended. I spent a lot of time thinking over the weekend about what happened and why I gave up my power so easily in this group. Why did I just sit there and not say anything? Why didn't I explain my alopecia to them when I first met them? Why was I so surprised that this happened? And through all of this thinking, it occurred to me that I've been trying to "pass". I've been telling myself and trying to tell others for years (probably all of my life) that I'm no different from anyone else, that I can do everything that everyone else does. And so the comments from these boys shook me out of "passing".
So in reality, "I'm no different from anyone else" simply isn't true. Yes I can achieve the same things as others, but I am different, and I need to remember this. Not so I can think of myself as "less than", but to empower myself to make decisions and act in ways that are consistent with who I am and how I need to navigate situations. My process of getting to where I want to be will always be different, because of my alopecia. And this isn't a bad thing, but it does mean that I need to start being more honest with myself and stop trying to be "normal" or "average", whatever I think that means anyway.
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Comment by Elaine on March 24, 2009 at 5:24pm
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I don't know how I would've handled that situation. Overall I think u handled it well. Sometimes hearing certain comments will make a person overreact which only makes u sound defensive instead of informative about alopecia. But it's still not too late to inform those mature enough to listen and not make jokes.
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Comment by Dielle on March 24, 2009 at 8:38pm
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It is very easy to feel paralyzed in a sense when people are poking on your sore spot that makes you feel insecure, especially when you haven't really had something like that situation. I was teased in middle school (all three years) and I never said anything to anybody when I should have. I think the first time something like that happens is the hardest time to assert yourself and explain everything. Now you know for next time something like that happens what course of action you want to have. The best way to react in a way that you like is to have a plan, because if you walk around without one you are essentially hobbling yourself. Personally if anyone ever did something like that to me again I would explain to them what alopecia was calmly, but in a way that would make them feel guilty for being so insensitve. If someone ever had a friendly inquiry I would explain in a way that would make them feel good because they were curious and were brave enough to ask. I also have a plan for what I would do if anyone ever intentionally took my wig off to embarrass me, I would turn around and punch them in the nose! Having a plan will empower you to act in a way that you can feel good about, and that follows with the kind of person you are. Good Luck!
Dielle
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Comment by Tallgirl on March 24, 2009 at 10:22pm
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I think situations like this would be hardet for the alopecians who USED to have hair and USED to put people down or ridicule people who were different...then suddenly realized that they, themselves, may now become targets. What a shock, come-uppance, etc. I know I am painfully aware of anyone I teased before I got alopecia at age 10. Luckily, I unlearned that behavior quickly and never became a Mean Girl in high school!
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Comment by Emily on March 25, 2009 at 7:56am
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Thanks for all of your comments. It's great to hear from others who have had similar kinds of experiences. I'm realizing more and more just how difficult it is to find people who know what I'm talking about. I guess that's what makes this site so great!
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Comment by Galvin on April 23, 2009 at 1:04pm
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Divide and Conquer....pick on someone in the front of the class and start talking to them about hair. Don't
talk like you want to whole class to hear....then start class regularly. Learning to deal with the paralyzing
emotions of alopecia will serve you well later in life when "all about you are losing their heads and you
are keeping yours". :)
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