Why are People with Alopecia in Hiding?

It occurred to me, after talking with many people with different types of alopecia that this condition is something that we don’t want anyone else to know we have. 

For example, I spoke with a mother and daughter, who have both had alopecia since their teen years and both told me that some of their close friends don’t even know that they have the condition.  Additionally, the salon that I  go to to get my hair piece adjusted has a special room for people who don’t want others to see their lack of hair.  I understand not wanting to stand out in a regular hair dressing salon, but in a place designed for people with hair loss, shouldn’t we be open and comfortable with one another?  I have left my name and number at the salon so that if anyone wanted to get involved in a support group or just talk, they could call me.  No one has called.  The hairstylists explained that people do not want other people to know that they have this condition, so they try to be very discreet about it.

I did try to keep it quiet about my own condition and didn’t discuss it with people for a couple of years, fearing that I would be judged.  But I found the more I tried to contain it, the more withdrawn I became and the more uncomfortable I felt in social situations, scared that a bald spot may show itself or that the wig I was wearing would be discovered.  What is that all about?  And you know you have felt this way too – I am not alone here.

So I decided to experiment a bit.  Recently, I went to dinner with two other women that I met at my yoga studio.  I decided I was going to go out on a limb and tell them that I had alopecia, and as it turned out, one of them also has alopecia and the other has autoimmune problems and sometimes experiences hair loss!  It taught me that by opening up and talking about this with other people, it gives them permission not to be perfect either.  It was a huge relief to all of us and has really brought us closer together as friends.

Needless to say, I have decided to tell everyone who I am friends with or become somewhat close to, that I have alopecia and de-mystify it right from the beginning.  My classmates at my new college know, and so far everyone has been supportive and understanding – but why should that surprise me? 

People with other autoimmune problems, illnesses or disabilites do not walk around in shame or guilt about having contracted an ailment.  Yet those of us with alopecia feel we need to hide, slink away, cover it up and not be open about it.  Why do we feel so bad about ourselves as if it is something that we personally brought on?

I think that by reaching out and being authentic from the beginning we can bring down the illusion of perfection that we often create and in doing so, we have real experiences and relationships with people because they don’t feel they have to be perfect either. It has also brought another thing to light – perhaps I fear judgement because I am judgemental of others.  Yuck – that is not me, or it better not be.  But it has brought the awareness up, so I watch my thoughts very closely when I am with other people.  After all, would I ever judge someone just because their hair falls out?