Alopecia World
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I outed myself as having alopecia on Facebook
After being inspired by so many people's bravery and acceptance on this site I finally plucked up the courage to share a little of my experience of alopecia and add some photos. What has really helped me this year is the research that alopecia is genetically similar to rheumatoid arthritis and type 1 diabetes. It takes the stress off being told alopecia is caused by stress if that makes sense. It's a weight off my mind and a cure for the self-blame I have lived with for years. I feel happy and liberated that I have now exposed myself for who I really am and that I am not hiding anymore. Right now it feels good and I know I am climbing the ladder to more self acceptance. Reading things on this site and having contacts and understanding has really helped me take this big step. So I am grateful to be a part of this worldwide network of support. Thank you!
Replies to This Discussion
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Permalink Reply by Lorna on
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Well everything went disaster!! After the support from friendsI thought everything was good. But my parents turned from thinking it was a brave thing to do to being more than extremely unhappy. My mum said they googled me and found my picture online. That anyone could see it and that was terrible as it could affect my job. That they couldn't believe I wrote on my face. (I think of it like art). How I have no make up, hardly any clothes (a strappy top counts as far as I'm concerned.) They said my cousin was "scared" of the pictures of me and I could scare people if anyone I knew saw the photos of me. They said my Aunt saw the pictures and thought what state of mind could I be in to do such a thing? They were implying my actions required some kind of psychiatric issue. Mum restated how unhappy her and dad were and how could I not consider their feelings or think of them before I did what I did. They said they were sad and disgusted with me. I told my mum to leave because I was just so upset and knew I wouldn't be able to talk anymore without breaking down. She said no and so I asked her to leave again. She said how I didn't respect them and their feelings/views and I just said how they weren't respecting my feelings on how to deal with my condition. I am absolutely devasted! I feel like they are saying that I need to hide, that I should be ashamed of how I look (it's scary) and I am not socially acceptable. I am having to take some time out from my family because this has thrown it right off course. Am I overreacting? Am I being to sensitive? Was I wrong to not consider them and the wider implications icl. would a job really get upset with my photos? I am quite shocked at their reaction but at the same time they often react this this is I ever do something outside of the "norm" whatever that is.... How things can turn around in such a short time....
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Yeah, thanks for that! Shame it's just my parents that have issues at the mo'. I'm taking some time out from them just now and think I just need to let things settle. Lx
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Permalink Reply by Tallgirl on
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I do not know your age or if you are in the working world, but in the U.S.A. people are cautioned that, yes, prospective employers often look to see what people put on their Facebook profiles (Hobbies? Rap? Tattoo? Slang and swearing? Bragging about criminal behavior? Etc.) when they are deciding on whom to hire or how an employee may fit into that business. Maybe your parents know that. Also, parents of certain generations or cultures can be quite conservative, and their crowds/family/neighbors can be quite judgmental...so the parents do not look at their children as people, only as appendages that impact THEIR world and status. What was fun or courage for you became an embarrassment to them. True, you didn't consider all the job and parental impacts, but neither did they talk to you (or you to them) about your need to take a stand about alopecia. Go fix your Facebook to look professional, delete any negativity, and put up a photo that will make you look like the employee you intend to be for someone (no writing on the profile pic, then put in security options for access to your other pix). I tend to keep any hairloss pictures only on this site, and only for some people. Would things smooth out with your family if you made some changes, quietly? As to your cousin...you didn't tell her age or her emotional state. Maybe it is time to block a few relatives from Facebook access?
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After your comments I decided I should look into work related issues regarding my alopecia. I had a confidential chat with the human resources department and they were very supportive. They recommended I speak to my workplace as I am becoming more open about my alopecia and I can call anytime for advice or if any issues were to arise. My profile pic on Facebook is no longer my bald one so only friends can see my alopecia album. So it was really work looking into workplace stuff and I'm glad they were so supportive. Thanks for your comments because it really made me consider how it affects my work more. Lx
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Permalink Reply by holyhairlossbatman!! on
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Ok I HAVE to say this. The very first contact I EVER had with you was that photo and the very first thing I thought was 1. youwere strikingly beautiful 2. It WAS art 3. It was making a statement broader than the confines of the photos borders. That photo I saw told me that you were ultra cool in my book. I did not in any way think that you made an unhealthy psychiatric choice. I do not think your photo or your actions are indicitive of anything unhealhy. My schooling is MSW (Master's level Social Work- the training many folks have to become therapists) and I have worked extensively in mental health and I can tell you that I saw nothing screaming inappropriate to me. In fact, I thought that it showed a marked HEALTHY attitude in self acceptance. What I do think is unhealthy is the attitude that there is something that you need to hide, and the attitude that you should be ashamed of something that you shouldn't be. They are encouraging you to live a shadow life and not express yourself. Maybe that is out of love, I don't know, because as we know- some people can be unkind. I also notice some manipulation. They are trying to make you feel guilty over something that they had a disturbed reaction to. The reaction is theirs, not yours, and yet they want you to own it. I think that what you did was not in any way trying to hurt their feelings, but express your own. Your family's reaction could be indicitive of how they feel about the difference in your true appearance. It may bother them because they saw you when you weren't "sick" and had hair. Your parents may have unvoiced guilt of thier own over this. It is a difference that has been covered up by wigs and they remember you with hair. I think it would be appropriate to assert that you understand it may be hard for them because they aren't used to seeing it in the mirror, but that it is NOT something that you should be ashamed of. Sometimes family means well. Sometimes family does not. I don't know the dynamic of yours, but it is important for them to understand that this is you, dealing with the you in the mirror and processing these emotions that come from this condition. All that is the professional side of me talking. Next, think of how you live your life. TallGirl is right that some employers are snoopy and others can and sometimes will use Facebook and other social media to judge you. Maybe that matters to you. Maybe that doesn't. To a very small degree that matters to me, but for the most part, I just don't care and choose to express myself in ways that others may not. Some of it may depend on the type of job you have- some fields are much more forgiving than others. I just choose not to live in that kind of censored way, but I do understand the valid reasons that others choose to do it. It just has to match you and where you are at. And I just have to say- none of them are artists are they? I am an artist, and some of the art that I have done has been shocking and/or potentially offensive just because to the outsider it is not really understood. It's art. It's expression. When I am doing it, dead last on my mind is what someone else will think of it- it is all about me- which is one of the reasons that it is so therapeutic. Is it art if you have to not go where other people might not understand? NO! Sorry to be so longwinded, love, and I'm so sorry that this has happened to you. I just want you to know that the minute I saw that pic, I knew we had stuff in common and for what it's worth sweetie- I RESPECTED you for your actions. Hang in there and message if you want to.
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Thank you for your long but totally worthwhile message!! I really appreciate it! I want to do justice in replying and I won't get a chance for a few days but I will message you then. Thanks so much for your thoughts I am definately on the route back to positivity! Lx
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Permalink Reply by Dana on
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Glad to hear that Lorna I too think my RA is linked to my alopecia. No one knows about my condition yet but a good guy friend has offered to shave with me it's time I just need to find the courage this weekend I hope! I know I will feel better cause right know it looks like I'm sick I am always worried my hat will come off or scarf will slip sucks I hope I have more self acceptance by doing this
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