Comment by Deb K on August 30, 2010 at 12:51am

I soooo understand what you mean. My friends have reacted the same way, they try to suggest things and ask questions, they act like I haven't searched high and low for the reason this is all happening, ugh!! We are lucky to have a site like this where we can come together and support each other.

Comment by Tallgirl on August 30, 2010 at 2:07am

We humans seem to have a need to "make someone better" via teaching, kindness, medicine, make-up, training, etc. After all, we are on this site, yes? However, when others do this to US, it seems we can only take so much of it...especially when the "even though" and "regardless" words negate or excuse any positives. [Note to self: never use these words in regard to those with religious, racial, sexual, weight or cultural differences.]

When we move away from home to attend college, or just move away and get our own health plans, it is much easier to also move away from:
doting parents-in-denial
stares (from those who once knew us haired)
obsessive attempts by others to diagnose, cure, become The Hero.

Moving and starting over are two of my solutions. Nice wigs also shut the voices up! Not much can be done about another's intelligence, tact or memory, so sometimes we have to take creative or sure steps in helping ourselves.

Comment by MiNAH on August 30, 2010 at 7:30am

STOP LISTENING TO THE NEGATIVE, OPINIONATED PERCEPTIONS THEY ARE GIVING YOU...STOP TALKING TO THEM AND EXCUSING YOURSELF. YOU HAVE NOTHING TO ANSWER TO. WHO GIVES A RATS "A" IF THEY EVER COME AROUND. MY FAMILY AFTER 39 YEARS STILL HAVE A BAD ATTITUDE. STILL PITY ME AND STILL PUT ME IN THAT BOX. LET THEM ALL STIR, AND GO LIVE YOUR LIFE....DON'T BECOME A PRISONER IN YOUR OWN LIFE, CAUSE THAT IS WHERE EVERY ONES IGNORANCE SHALL KEEP YOU. FREE YOURSELF!

Comment by Emily B on August 30, 2010 at 10:34am

Thanks everybody! I'm definitely staying focused on the positive and going on with my life. It's great to have this support group here. I talked to my family and friends a lot last week about my new spots because I was trying to deal with it in my own way. I am sure they were just trying to help.

My mom and dad haven't actually seen my alopecia in person because I live about 1000 miles away. They've only seen pictures that I've sent to them.

Comment by Carol on August 30, 2010 at 10:41am

Alopecia teaches its bearer many things, one being who your real friends are. Some people will never be prepared to accept you as you are and will continue to scrutinize you as long as you're still connected to them. This doesn't just happen with alopecia so you're not alone! These people have what some call a "poisonous personality" and whether it be a conscious or unconscious decision to irk you, they have no right to make you feel inferior in any way. You know you are still the same person with or without hair, you are perfectly healthy if alopecia is your only concern. You don't have to move away but you may find that over time you will start to (or would feel better if you did) hang out with people who are more accepting and appreciate the little things in life that should be everyone's priority but sadly isn't. Part of accepting your hairloss is accepting the fact that some people just won't understand, even family. Be strong, we are all here to support you! :)

Comment by Kate on August 30, 2010 at 2:38pm

I think often people's reactions are also reflections of their own fears coming into play. Many women especially find the thought of hair loss incredibly frightening, so by focusing on solutions for you, they are also in a way comforting themselves to the possibility it could happen to them.

Additionally, some people like to put off or delay finding acceptance, because the process of reaching acceptance can be hard. I think each of us go through struggle and discomfort and worry and anxiety and fear in the process of reaching our own acceptance, so it makes sense that those close to us might experience similar feelings on their path. It's uncomfortable! So its easier for friends and family to put off this process (and since they are not confronted by it all day every day like we are, they have the luxury of putting off the feelings). Searching for solutions is one way to procrastinate but still feel "helpful" and "supportive" (even if it is neither of those things to us).

The good news is your acceptance and confidence can help prompt their own process. I have full faith that of course they will still love you, and of course they know you are still you with or without hair. And when they finally find acceptance, you will together be able to move forward and help others find theirs.

Comment by Tallgirl on August 30, 2010 at 3:50pm

Kate has hit on something here. Also, that "There, but for the grace of God, go I" fear of having it themselves must make a LOT of people nervous before they know more about this condition. Once we KNOW some ONE person who is "different" (first friend of a different skin tone, first person of faith X, first person who doesn't speak one's own language) in any given category, we become more accepting of that difference globally as long as the experience was positive and real (not based on negative stereotypes or hearsay, and not just what parents or judgmental friends say). So, that said...maybe send pix that are positive and smiling for awhile to family so they will see your own acceptance and positive feelings about life. As a special person told me, you are in this TOGETHER. Maybe you can also protect your loved ones a bit from dispairing FOR you. Change the topic consistently. Find a positive passion to discuss on every call, visit, letter, e-mail INSTEAD of alopecia, to TRAIN THEM in being upbeat. No one needs looky-loos or gossipers in one's own family or friendships, so once you don't give them that lead-in, they will be forced to drop it if they want to speak to you.

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