auntypammy@webtv.net (Pamela
Chepotch)
What to say when People ask about Missing Hair:
I also agree with xxxx that you don't owe anyone an explanation.
So whether or not you choose to answer with Truth, half-truth, or fib is
TOTALLY up to you - because you either have to live with the annoyance
at the moment - or possible annoyance later if it is someone you are
going to see agian. Plus, everyon'es comfort levels are differnt - for
how much they are willing to share with people.
I have different reasons for sometmes sharing the truth - and sometimes
fibbing - and some of those have also changed over the years. Educating
myself about my condition over the last 3 years - and going to the TLC
Retreat - has changed some of my embarrasment levels - and made me more
willing to share with strangers - but it still depends on the situation
too.
For example - if I am in a Supermarket - and it is an older person
walking up to me and asking why I don't have any eyelashes - anyone that
Rude to begin with is probably not going to help the TTM cause by my
trying to educate them about TTM in 1 minute.
So I would usually, just say, "Yeah, I know" and not answer - or say it
is none of their business - or "the firecracker in the face" "got to
close to a candle" comments. I have never gone with the Cancer or
Alopecia answer, although I know a lot of people do.
My goal was, if I was not going to tell them the truth, I didn't want to
give an answer that would just engage them in more conversation.
Of course, there were always sympathetic people nearby, (also appalled
at those people's rudeness) - who 'might' have known someone else with
Trich - who then could have helped someone else if I had explained my
condition.
I have to say - it always amazed me that so many people would word it in
this way, "Do you KNOW that you don't have any eyelashes?" Sometime in
my life, I do just want to Yell, "NOOO, What happened to my face?" and
run screaming out of whatever store I am in :))) At least it's fun to
think about.
If a younger person asks me - or a neighbor - I am more likely to go
with the truth. Most of the people I have told respond very well - but a
few have just looked at me like I was weird, and then avoided me.
I told my massage therapsit - the "Service" types people never seem to
ask - but I knew she was goign to see the bald spots so I told her. And
she agreed to put TLC brochures in her office because I did. I have also
told a Hair Stylist, but never asked her to put brochures up.
With little kids - I would usually make it an easy explantion - I was
born with something that makes me have less hair - you can't catch it
from me like a cold. You know how you were born with Brown Hair - well I
was born with less hair and/or no eyelashes. Or, my hair just doesn't
grow the same way yours does. The
Great thing about telling kids, is that they are SO accepting. They just
take whatever explanation you give them, and then give you a big hug.
And after that, it is just no big deal to them.
So, there are 'potential' benefits for ourselves by telling people - but
it depends on the type of person sometimes. And, if you are just not
ready, you are just not ready. Plus some people will respond with more
rudeness, and you have to be willing and ready to accept that possible
consequence also.
People with HIV don't walk around the supermarkets saying - HEY, I am
HIV positive.
But, there are also tons of people fighting for their cause now, while
they maintain their privacy.
But we mostly have only ourselves to bring about awareness of our
Disease - which will then hopefully lead to more ACCEPTANCE, and
possible even more research and a cure.
But the bottom line is - our TTM is also a medical condition - and it
really is not anyone's business - so we have a right to stick up for our
privacy.