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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 Lawrence on
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I would say that it depends on the person you tell. I'm a guy and I'm 18 and I'm completely bald and two years ago I had an Afro to help cover the spots and I decided one day that I should tell my friends so I showed them the spots and told them about how the disease works and they were pretty accepting about it and it helped me relieve alot of stress knowing that they knew. My advice is if your friends change towards you because of what you're going through then they weren't your friend to begin with because friends are supposed to stick by you through thick and thin
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Permalink Reply by Dedi on
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I only have a few friends that know fully about my scalp condition and only a selected few have actually seen it. For me and like most....it is a very personal issue that not many can relate. I say it's ok if they ask questions to inform them that she has alopicia...but I wouldn't go in depth with everyone...only her true friends will accept and understand her struggle with a disease that is sooo personal as hair loss.
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Permalink Reply by Cindie on
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There are people in my family (and friends) who have NEVER seen my shaved head, and they never will....too judgemental.
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For females it's a personal issue...for guys it's ok to shave ur head and walk around bald....but for a woman and a young woman...hair is so much apart of us....so I hope she stay encouraged and discuss it with her True FRIENDS...that may only be her one true BFF ....ride or die best friend!
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Permalink Reply by Heather Lorelle Mattisson on
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I was terrified that something out of my control changed my look and how I saw myself and would not admit to myself I even had a problem. After I actually admitted it I thought, "OK. What are you going to do when you go home and your family sees the big open plugs in your head? That night I took pictures of my head, wrote what was an honest email to my closest family only and my 2 best friends. I then squeezed my eyes shut and pressed Send. What I received back was overwhelming, unadulterated, complete love. I would say this: if you can't be fully yourself in the presence of those you love and trust the most, you are not being a good friend, or you don't have any friends. That is it. Being a friend also means you don't hide from the people who love you. If you hide from even them, what do you have? And if the above is not convincing evidence enough, here is the advice from my own mother, which shook me to the core and got me out of my spiraling fear: "Heather, it is just HAIR. It is not the meaning of life. It is just hair."
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Permalink Reply by Nuni Ta on
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Mmmm... people are shocked at the beginning, but I think If you talk about it in a normal way everyone is ok with it.
I always go to the beach with my friends and all the people I know are aware of my condition.
Never had any problem.I think sharing will make her life easier.
Good luck!
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Her true friends will still be there for her once they know. Mine all were although granted my AT developed in my 30s so we were all adults. However, I'd like to think 19 year olds are mature enough to handle such news. Put it this way if one of her good friends had a medical condition would she want to know especially if it was causing that person pain? My friends treat me NO different whatsoever. Infact one of my closest friends has since developed lipoatrophy in which the fat on one side of her face is 'eaten' away. Its a very uncommon autoimmune disease especially in NZ. I treat her NO different infact I feel real empathy she can't easily 'hide' her conditon as I can and doesn't have the kind of support we with Alopecia do. Lipoatrophy or not she is still my bestest friend of 15 years.
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Permalink Reply by Pat on
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My opinion is to let your sister decide when or if she tells her friends. She is dealing with it the best way she can. From my perspective it certainly helped me when I started to tell people I had alopecia but most of them although sympathetic don't really understand and come up with all sorts of lotions, potions, and advice as if we had never thought of them before! That can get irritating real quick. Most people tend to think we bring it on ourselves in some way [ie stress]. That is not true. Stress may be a trigger for some, but it doesn't contribute to whether your hair grows back or not. It's admirable that you want to help your sister, but she will know when she is comfortable enough to share what's going on. All you can do is support her decisions.
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Permalink Reply by Cinder B. Rand on
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Hello big sister,
I am not sure if there is ever a right or a wrong way to handle this. Every one of us walks a different road. It is wonderful that you are there to help her if she needs to talk about it. For myself, it is now 6 years and 1 month that I have had Alopecia all over my body. At this point in time I pretty much tell everyone. I use to care a lot more about who knows, what will they think of me and then I just realized there are other things for me to be more concerned about. I was still me and I always liked me. Most of my friends have been amazing along with people that I met through having Alopecia that also have it. Every one is so completely different. I have met people that have had it most of their lives and still cannot accept it. It is hard for them to move on. I have found that people in my family have taken it pretty hard. It almost makes me uncomfortable to be around them, so I just do.
I am not sure that I am answering your question as I am not sure that there is an exact answer. This summer I am considering going out without a piece on my head. Little sister will find her strength along the way, just be there for her and love her. Tell her we are all here for her as well. We are way more then our hair. Hugs and Peace Cinder
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Permalink Reply by Essence on
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90% of the people I tell think its awesome. when I first told my group of friends at a sleepover at my house back in high school, they were extremely supportive. I even showed them my chest of wigs and they put wig caps on so that they could try them all on! one of my friends had too much hair to try to stuff into a wig cap & the other had braids in so the wig didn't lay flat & I became the "lucky" one that night because they really wanted to wear the different wigs. I'm 20 now & I've told about 10 people in my college years (3 so far) about my alopecia. (I'm even doing my thesis interior design project as a center for people with alopecia which will be presented to a whole lot of people but that's besides the point) most of the girls think it's awesome that I only have to shave once a month because all I grow is peach fuzz. a guy I was dating told me he found me way more attractive after I told him about it because it "showed my strength". my ex boyfriend obsessed over every picture with my hair off because no hair allowed him to fully see my "beautiful face." (his words, not mine) most people I have told have been absolutely nothing but positive about it. and hell, if they're not, I don't want them in my life ANYWAY!! I don't even remember a bad reaction I've had to telling friends I have alopecia universalis, I'm bald & I wear a wig... I don't think I've gotten one. at the end of the day, are we really only friends because you think the hair on my head grew from my scalp? because if so, no thank you! be strong girl. overcome alopecia, don't let it overcome you. if these people are REAL friends they will support you and it wil be amazing to have them there to talk to when you're feeling down about it because we all have those days. If you want to talk, message me! we can email too. I'm in your age range. 20, going on 21 in Oct. and I've had alopecia since I was 8 so we both have 13 years experience under our belt (; Good luck. XO. -Essence
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Permalink Reply by JEANETTE on
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AWESOME LOVE ALL THIS POSITIVENESS, AND STRENGTH AND MOST OF ALL ...LOVING URSELF TO KNOW WHAT YOU WANT OUT OF LIFE, BY NOT LETTING OTHERS MAKE YOU FEEL LIKE A VICTIM TO A CRIME, BUT TO PASS ON THAT KNOWLEGDE N STRENGTH TO CHILDREN THAT LET THESE IDIOTS DICTATE THEIR LIVES~ GOD BLESS.. YOUR MAKING A BIG DIFFERENCE MAMA..
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Permalink Reply by Retha Rogers on
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For me I had to accept it and be comfortable in who I am. I realized my hair don't define who I am. My friends accept and stood by me. Too be honest I seem to be more confident with this look. I love my look
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