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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 Dena on
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Is it that she is trying to hide it, or she just doesn't know how to go about telling people? When my daughter was first diagnosed at 5, I didn't tell anyone. It wasn't that I was hiding it, but I just didn't know how to go about telling people. At the time she had thick hair down to her waist. Unless I pulled her hair up, no one knew. I felt silly talking about it, because people were always commenting on how pretty and long her hair was. Would they think I was just being dramatic? The few people I did talk to said not to worry she has so much hair and it is going to grow back. I just really didn't feel like anyone understood. So I kept my mouth shut. A year later and all of her hair fell out. I finally had to open up with people who were concerned that it was something much worse. People still acted awkward when I talked about it. Not because they are not true friends, but they just had a hard time finding the right words. They wanted to be encouraging, but didn't know how. It has been about 6 months since my daughters went bald. Things have gotten better, but it did take some time for people to get use to her new look. Now most people admit that they forget about it. It is just normal now. I say if she is able to hide it and wants to keep it to herself, than that is her decision. If it was keeping her from getting close to someone it would be different, but it sounds like she has friends so it isn't isolating her from people. I have a scar on my face that I keep hidden with makeup. No one says I should let everyone know about it. It is information I choose to keep to myself and prefer not to explain.
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Permalink Reply by bree on
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hi there,firstly-if ur sisters friends dont accept her with the condition she have-then let c leave them,y have friends wu cant accept you for wu u r and what u have-i have alopecia-last night my eldest child told me tht his cuz made fun of him by telling him his mummy have a bald head-yes i felt bad-but i told my child that he musnt feel hurt bcos his mommy cant help it-atleast we healthy-we do have people wu love us,i feel sumtimes like commiting suicide,but thats so stupid-friday when i went to my check up-i met a lady with alopecia aswell-we exchanged numbers-added each other on whatsapp to motivate each other-i will be ur sisters friend,a real friend,a true friend.....my number u can give her,c can add me on facebook even
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Permalink Reply by Maija Cebere on
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This is a hard decision, and how you feel about it changes every day.
When I was walking around with a wig, I though that when the hair would grow back, I'll tell everywone like "Hey, did you know I was wearing a wig!" But when it eventually did (and now I only get some smaller or bigger bald spots comming and going depending on the stress level I have around me), I coudn't. It seemed that it is not appropriate anymore and most of all - I wanted to forget that dreadful time when I was scared to go to a party with sleepover, meet a guy or do anything physical that would trigger sweating. When the next 'inflamation' came, at the beginning I though - well, I'll just go bald before it becomes visible, and buy some really big earings. But when it got worse, of course it got harder.
But in while (I've had alopecia for 16 years now, starting from 18yoa) I grew to understand that hair doesn't define me. some people w/o alopecia have really bad hair days or a really bad hairdressers :), and when you look at them you'd pity them :) during that time they feel bad, but you grow used to their hair! That is what happens, when people find out about someone having alopecia - they get used to it! First they're curious, they want to understand, and then they are just supporting. SO, if someone is scared of one having bald spots or bald head, they will not be good supporters and thus - less friends. But a true friend is by definition 'support'.
I don't think there should be an 'comming out party'... there are moments when it is appropriate to tell one and each... or there is an opportunity to tell more than one. But your sister has to follow her gut feeling and get out of the closet when she feels it is appropriate.
People are good by definition, they are just sometimes scared. and maybe, if there IS a friend that 'runs away', after some time s/he'd had some time to think about it, s/he come back and appologize and maybe even become a better friend thatn before, because it would take them streangth to come back and say - sorry! I'm still your friend!
So, I wish your sister streangth and patience and understanding - people are scared of what they don't know. And hey - maybe it is a better way to 'filter' your friends now and see who's a real friend, and who's not, as opposed to getting frustrated later on in life in a different situation when you see they're not by yoiur side :)
Good luck and best wishes from Latvia :)
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Hi,
You are doing a great job in supporting your sister. From my personal experience, though I am male, I have found out that as long as you try to hide your condition you are prone to face social difficulties. It is not about how would people see you or you think would see you but rather how you see yourself. Basically you are trying to hide the condition form yourself. So, it takes struggle and practice to accept yourself as you are.
After this struggle and learning process I have become more charismatic than I was before I had AA especially while I hid AA. Usually I tell people that AA people are next step of evolution since "common" people have evolved from apes with having much less hair.
Also while I was young I have found too much care of my family members, while obviously perceiving me as "something is wrong, we should help and support", burdening. So perhaps you should analyze your feelings regarding your sister in order to be of even more help.
Regards,
Djordje
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Permalink Reply by Jennifer on
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I developed Alopecia suddenly at age 35. Once my doctor confirmed it was Alopecia, I decided to shave my head and be done with it. I told my husband and extended family first, and then told everyone else at the same time by posting about it in a Facebook update. Mostly I wanted control over my own narrative so people wouldn't feel awkward about asking about it or speculating that I was ill the next time they encountered me without hair.
The feedback I received was very positive, and many friends, colleagues and casual acquaintances expressed respect for my decision to just deal with it and get on with my life. If anyone had any negative thoughts about it, I am unaware of them, and I don't care to know. I know that my attitude toward my Alopecia is a bit atypical, but here's how I see it: If someone else has issues with my hair loss, then that is a problem within them. But if I have issues about what others may think about my hair loss, then THAT is a problem within me, and I am the only person who can resolve that.
I understand you're trying to be supportive of your sister, but this really is her journey, and it may be that the best support you can give her is respecting her right to find comfort and confidence on her own terms and in her own time.
If she's not already a member of this website, why not show it to her so she may post if she feels like it rather than you posting on her behalf? I bet she'd find plenty of young women her age who are going through similar things right now. Nineteen is a stressful time for many, with or without hair.
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I am new to this, and although I have no problem telling my close friends, I don't show my head to anyone except my immediate family. Maybe as I get more used to it I won't care about showing it, but at this point it is easier to talk about than to show it. My friends have pretty much all been great and I do not think it has changed my relationships at all.
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Permalink Reply by Bald and Fabulous AKA Terri on
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Yes my relationships changed when I told them about my aalopecia. and I spent many years hiding my secret too. some took to the news as no big deal others decided I wasn't worth the effort. years later I have now decided I don't care who knows but I careful who I let in my friendship circle.
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Permalink Reply by Cindie on
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I understand EXACTLY where you are coming from Bald and Fabulous AKA Terri.
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Permalink Reply by Dielle on
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All of my friends responded really well when I told them about my alopecia. Most of them were surprised but really supportive, and it didnt change our friendship in any way besides making us closer. I also felt like I could be more open with them about everything that was going on in my life because I wasn't having to keep this huge secret. I lost my hair when I was 11 and I am now 22. I didnt choose to tell my friends until this year because I wasn't ready before (got teased a lot when I was younger), but I am so glad that I did because it felt like a weight had been lifted. You are right, it adds a lot of stress when your friends don't know, but she should wait until she is ready to share it with them. I personally think of my alopecia as a way to figure out who the people are that I want to be friends with because if they aren't supportive and cool with it then I don't need to associate with them anymore. Good luck to you and your sister!
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Permalink Reply by Patrick Moore on
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I've only told a couple people and that's only because I can't stand the usual "Alo what?" and the dumb confused look on peoples' faces when I tell them.
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I know where you are coming from, Patrick Moore. And not only do they look confused, sometimes people ask "what did you do to cause this?"
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