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How did your friends take you telling them you had alopecia?
My sister has alopecia and has had it since she was 6, she is now 19. I am trying to be the best older sister I can be by supporting her through this journey. She has yet to tell any of her friends of her condition because she fears they would look at her differently and only see her disease instead of who she is, despite the length of time she has had the friendships. I believe her trying to keep this a secret only adds to her stress, which worsens her condition. I was just curious (particularly for women / girls who have told their friends) how did your friends take the news ? Do you feel the relationships have changed since you told them ? Do you think your friends look at you differently ?
Any responses would be so great and helpful as I try and help my sister through this journey.
Thank you !
Replies to This Discussion
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Permalink Reply by Dorothy on
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I have had AU for 40 yrs now, at first I told no one except those who I knew when it first started happening to me. Years later I tried telling new friends as I made them as my husband was in the Air Force, I would say that 99 % of them treated me like I had the plague, very few understood and remained friends, and these were grown adult women. I even had one woman argue with me that I had aids. One other woman argued with me that I had a nervous condition like her and pulled my hair out. I finally gave up telling people and now only rarely tell anyone and never ever, ever allow anyone to take my picture as the wigs look so fake to me that can not bear to have my picture taken. To me it is just not worth the rejection, but you have to weigh the risk with each person you are considering to tell. I find that since I work mostly around medical professionals, they are a little more understanding than the general public.
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Permalink Reply by Cindie on
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I am so sorry, Dorothy. I cannot imagine what you went through 40 years ago. And unfortunately, women can be much meaner about these things conditions then men.
As for wigs not looking "natural" -- today's wigs can look very, very natural. I wish I lived near you. I'd take you to a good stylist, and we wouldn't quit until you found something that you loved, so you could have your picture taken.
Peace and Blessings,
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For me the battle continues, I work in a Federal Employment position, I have over 28 yrs. Last week my boss decided to update a status board that was done before I started working in this section, what this means is having my picture taken and then posted in a larger frame and hung in the hallway with the rest of our section. I refused, I told him he could NOT order me to do this, it was not for ID purposes, he then informed me he could order me and that if I continued to refuse he would call HRMS (Human Resources) and submit paperwork to have me fired. I told him try it, he can not fire me for refusing to have my picture taken. About 30 minutes later he came down to my office and told me if I did not want to have my picture taken, why didn't I just say so, while he was talking I was still upset and I told him I did not care to discuss it. But I had already told him 3 times I did not want to have my picture taken, so apparently he had already called HRMS and I was right and instead of just letting it drop and leaving my be, he had to come in all smiles and pretend I had not simply said I do not want my picture taken, I will not have my picture taken for personal reasons. Oh why don't people just listen.
I know your heart is in the right place, but I have no eyebrows, I have no eyelashes, I do not look normal, wigs are only part of the problem. What if I go to extremes to get the brows done either with tattoo that I have read about or some other kind of procedure that I do not understand and they look hideous, I would be stuck, I can not take that kind of chance, I look hideous enough with out being stuck with something I can not undo. That still does not answer lashes. No I will never be comfortable having a picture taken, not in this lifetime. Others are comfortable with it, not for me.
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Permalink Reply by Marieca on
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When I finally decided to tell my friends they were like "do you want to talk about it" i'm like not really just wanted you to know they're like "ok so what are we doing tomorrow". Saying that to say, they didn't care one bit about the fact that I did not have or was losing my hair. Your true friends will love you unconditionally. If anything my friends got more defensive of me. If anyone remotely mentioned me wearing a wig or looked at me with the side eye they were ready to pounce. Lol.. if these girls are her true friends they love her for who she is and will not change toward her. If anything it will bring them closer. It also does lift a weight off your shoulders to have your friends know. Saves you the energy of trying to hide it from them. It made me feel better to know I had someone to listen to me vent or cry even if they haven't experienced it themselves.
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Permalink Reply by JEANETTE on
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My daughter is only 5 yrs old dealing with this and is in early stages of alopecia. I was secretly hoping it was areata however as of this week her eyebrows n lashes are falling off. I have done all home remedies that has so far allowed her to keep bout 30% of her hair. Still falling off but at a slower rate, i dont know if thats a good or bad thing. My mom had alopecia Universales since she was 15, bak in the 70s wen no one knew about it. She was tortured everyday to a point she moved out of her home town changed her name n lives her life in Jersey. My mom for over 30yrs++ was always embarresd bout it and always kept it a secret. being raised by my mom and being the eldest, i knew she had it cuz she had some awful wigs in the past, but i was waitin til she was comfortable telling me she has it. That day never came only til my daughter was diagnosed with it then she set an afternoon with me to talk about something she is still not comfortable with. She cried just as hard as she probably did 1st day she had it. My mom chooses to keep it a secret, i guess cuz it still bothers her. Up til few weeks ago at a family event everyone was curios about my daughter because you can clearly see the Alopecia appearing. I chose to say it in passing convos, and inform people of what it is. how it happens..My mom was mad explaingin that i put my daughter on the spot and i made my daughter feel bad n singled out. I understand my mother was raised in a place n time where no one knew nothing about it. However now because of the bullying in schools, websites, etc. I chose to have conversations in front of my daughter as if its nothing but only hair. My daughter is 5 and i ask her about her feelings every single day. that day was no different. She said she was having fun, she wasnt upset or had deep feelings about it! Im trying to get my daughter prepared for wen the bullies do come her way with insults and i want her to brush it off with yeah alopecis, but bald n beautiful..is that all you got?! I want her to treat it with the attitude that dr's have for it now...its only hair but you have ur health attitude. Which is true compared to all this cancer kids. So, who do you think is right on approaching the matter of alopecia with the public. this is what i want my daughter to realize and realize now at a young age. The kids who except her with alopecia now will be her friends for life, and those that dont...well god weeded out the bad ones to keep her from arms way. I have come over hundreds of blogs and stories that made me mad, made me cry, n made me laugh. But at the end of the day, with the younger kids that revealed themselves without taking note of the consequences felt free ....of wigs , of hiding under a hat or wig. Im 100% sure as an adult, we would want given the opportunity to relieve ourselves of that added stress. then those that suddenly cut out on you would have done so with some major event in ur life, not just Alopecia, better for you. Those who say no big deal n stick around will, has, n will forever be that good friend you have grown to know.Society, tells us wats beautiful, wats not, wats exceptable, wats perfection. Im starting to realize that in the beginging god meant for us to love ourselves and truly be happy, before we can go out into the world and love someone else. However society has you out there doing things at a younger age, and not allowing you to understand,physically, mentally, emotionally, learn to loving yourself. This is an opportunity to do just that, to hell with anyone else that thinks any different, they dont know any better. Who lives by the "Golden Rule" any more? A small percentage, in the end, its wat you have for urself in this rat race of life. Even wen you think you have it all, guess what? you cant take it with you! Lmao! Suicides are the everyday norm, and i refuse to let some uneducated idiot that doesnt know what alopecia is harass my daughter. So, i figure the best defense for my daughter is with a good "Offense." By keeping her well informed of what she has, and arm her with the best weapon for society that gets kicks off making everyone miserable cuz their miserable, knowledge. I introduced my 5 yr old to a great friend of mine, maude sutherland. She has no hands or feet and this was due to a medication a dr prescribed mistakingly to her as a child. Instead of hiding from the world she confronted it. She attends College, top student, always on Deans list, involved in one too many clubs, president to many organizations. Sit down with her for one day n you realize the world is in ur hands you just have to jump up and take it, forget the whispers in the back round(cuz of self image, really?), and most of all "Self Love," is the armor of choice for this genre, because no one loves themselves anymore and instead of becoming part of the solution to a world wide prblm, they choose to be the statistic! I chose a path for my daugher, to be the "Voice" and not hidden in the bakround stage of life. I hope my mother can understand the decision i made is to protect her from the world. Not hide from it! Reality is "MOM & DAD," wont be their forever to keep you from harm, and in a f&kd world where kids are dying off in clusters, by suicides, cyber bullies, shootings, tornados, etc. "Only the Strong In this world Survive!"
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In the end, she will feel a relief, and that she can be herself without worry or stress. Get her to read various blogs, and she will realize, its herself she should worry about, love and care for,. Not have to worry how others see her. Their not god to judge. A majority of blogs also had stories of "i told my friends and they were like ok" and just didnt bother making it a serious issue, cuz her friends already knew what it was. they either hav a family member with it or friends. With a sister like you, she shouldnt worry about which friends choose to leave from her life, but celebrate with those who stick around!
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Permalink Reply by sdaniels7 on
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I applaud you for teaching your daughter how to face life. We have been taught to judge based on a persons external appearance. Hence we are always discriminating against someone for something that isn't how some group decided it should look....blacks, gays & lesbians, who should marry who.....to survive this life she must be able to face adversity ..... You don't know she could face something much more painful than hair loss & you teaching her to plant her feet and stand solidly may be saving her life....or,
preparing her to help save someone else's life in adversity situation. People know your mother wears a wig...she's a damn fool & think how betrayed people will feel if she's ever exposed......
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Thank you Sdaniels, I feel great knowing im not alone in taking the bulls by the horns..sort of speak!
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lauralcharles you go girl!! You can definitely lead some of these girls into that strong positive attitude of yours. The fact that your friends decided on making Alopecia define you and to outcast you! That right there shows your inner strength. Sadley this day n age people would rather kill themselves off instead of loving themselves because its easier than dealing with the problem head on. A strong individual like you can make a difference in other peoples lives~That goes to show you who your friends really are. What people fail to realize is at the end of this life its what you put into this life and what you disd for yourself! Did you experience all you wanted out of life? Did you touch others and start a chain reaction that people still talk about? Did those who truly love you stand by your side? Why people are easily distracted by someone elses words happens where eva you go, it doesn't stop and end in High School. In the work place , among your own friends. So, why bother with people who hav nothing better to do than hurt others. While their doing that your living your live as u please. At the end of the day, loving yourself and treating yourself to all the pleasures in life is all that should count..not some idiot trying to stop you from reaching your potential your goals!! Besides you have plenty of new friends here~ =) GB!! Its stories like yours that give me that hope and strength for my babygirl, Thank you!
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Permalink Reply by MaddiiBoo on
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One of my friends actually cried for me. It was me comforting her but I knew it was coming from a good place. For the most part, no one I have told about my hair loss has actually cared about my lack of hair. THey are all very supportive. They don't ask if I am trying to grow my hair back etc. They tell me how I look bald and are not ashamed to be seen with me bald. For as long as I was trying to keep my AT a secret, I was devastated. Now that everyone I care about knows, it seems less daunting.
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Permalink Reply by Joy Anne on
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I had Alopecia Areata since I was born. It was kinda hard when you're a kid because some of your classmates might tease you regarding your hair and of course, you'll get hurt. Having a wonderful family and friends makes your burden lighter. When I was in 4th Year High School, I had to wear a wig because my condition became Alopecia Universalis. I was scared during the first day of wearing it because I'M 100% SURE people will notice it. There was even this girl from our school who called me "Miss Wig" and when my best friend heard her, she grabbed her and told her to say sorry to me.The whole batch of 4th Year in our school, who heard about what happened, defended me.When that happened, I FELT GLAD. :)) I realized that having less hair will not make people dislike you. You just have to accept yourself first.
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