Alopecia World
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You are my support system. Does anyone find the experience traumatic? And one more question...
First of all, I want to say that this website is my biggest support system when I have no one to lean on for guidance in my real life. I feel that you are the only ones who can truly, I mean truly, understand the pain I'm enduring at this moment. So I want to ask you one question: did anyone find alopecia traumatic and difficult to cope with? When I told someone that I found the experience of losing my hair traumatic, she thought I was exaggerating. I didn't know how to respond to that. How did you come to accept alopecia as permanent in your life? Everyone is different so I would like to hear your perspectives on this.
Second, some of you are aware of the situation I am in. My female pattern baldness is progressing and it seems like Rogaine is not working well for me now. I just started university and I hate going to class with my hairline beginning to recede. The scalp at the front hairs is noticeable and I tried everything to hide it but to no avail. Therefore I've decided to wear a baseball cap most of the time (and a beanie in the winter or whatsoever) while I figure out how I can deal with this situation but I want to ask you guys, if it is rude to wear a baseball cap in class? I have had classmates wear a baseball cap or a hat in class and my professors did not seem to have any issue with it.
Thanks so much - I would not have made it without all your support!!
Replies to This Discussion
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Permalink Reply by kryssiecat on
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Traumatic, devastating, it was a terrible experience to go through. I went from AA to AU in two years. I shaved my head in March of 2013 and it felt good to just let go. Good in comparison to how terrible I felt about my hair falling out. A lot of my friends didn't understand. They kept telling me to "fix" the problem by wearing a wig. I initially had psoriasis on my scalp and wigs drove me nuts(and made me feel like everyone who saw me knew I was wearing a wig). Losing my hair was the straw that broke the camel's back in my relationship with my best friend, I felt like she didn't care, we stopped talking for tqo years. And during that time she became a hair model and my other friends would try to show me pictures she had sent them. That hurt a lot. Everyone has different reactions to losing their hair. Don't ever let anyone tell you that you're doing it wrong or you're not justified to feel the way you do(especially the "it could be worse" crowd, yeah, it could be worse but it's not and I'm trying to deal with what is happening to me). Wear hats, wear wigs, wear headwraps or scarves, shave your head and tell the world to stuff it; the choice is yours! If you need to feel crappy for awhile, let yourself feel crappy, just try not to let it happen for too long. Try to not let it rule your life and every decision that you make. We all know how incredibly difficult that is. The road to accepting how you look is a long and arduous path that is fraught with emotional peril.
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Permalink Reply by Mary on
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Kryssiecat...your post makes total sense to me intellectually and I wish I could be as strong as you are. I have only had this diagnosis for about 5 weeks and I am still a complete emotional wreck about it. I can't imagine how hard it would have been to lose my hair as a teenager. I am 67 but still teaching fulltime and very active in lots of things. I am exhausted mentally and cannot sleep at night. I see photos of young women who look very striking and beautiful without hair...but I never see photos of old bald/balding women. I get sick to my stomach thinking about losing all of my hair. Your advice is loving and wonderful but I can't muster the strength yet. Thank you.
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Permalink Reply by Barbara on
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Yes, losing your hair is very traumatic! I can't imagine that anyone would think differently. On one hand you are happy it is not life-threatening, but on the other hand, well... you are losing your hair! I think accepting is a process. At first you are kind of in disbelief that it is happening and then you slowly realize that you have to deal with it, and then you figure out what works for you. Total acceptance that Alopecia is permanent probably takes years, and I am not there yet. I can tell you that I teach at a university and I do not think it is rude for students to wear baseball caps or hats. I would have said this before I had Alopecia so don't worry about that. When I was still trying to hide my loss I wore a cap to meetings a few times just because I didn't know what else to do! I made sure the cap matched and made some joke about bad hair day, but I felt it was my best option at that time. No one really seemed to care. Remember that you notice and care more than anyone else does! As for me, I actually felt huge relief when I started wearing a wig. Yes, it was a bit hot and uncomfortable but I felt less self-conscious because people didn't seem to notice and that was what I wanted. I have no hair or eyebrows/eyelashes and I struggle everyday to just look like me and blend in. Overall I think you just have to choose to be happy. It is easy to do and you will learn to like yourself just the way you are. Try to stay positive and enjoy the journey! You will learn so much about yourself and about others and you may find that the lesson is worth the expense, especially since there is not much you can do to change it :)
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Barbara, I hear the words "choose to be happy" and from the bottom of my heart I wish I knew how to make that choice. I know it would be better for me to be happy but right now I just feel miserable. For the last 4 years, I have gone from one health problem to another (heart, cancer, thyroid, back, and athletic injuries that required surgery)but this alopecia diagnosis has upset me the most. Do you have any advice on what I can do to choose being happy? This is a serious question for me...I've always been naturally happy but am having severe problems now. Everyone tells me I am one of the most resilient people they know, but I feel that my "resilience gas tank" is about to hit empty. Thanks.
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Permalink Reply by Vamppp on
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Yes, I do feel your pain and I do know what you are going through. I started loosing my hair at the age of 35 and by 40 the entire top of my head was bald. I have partial alopecia and still have a bit of a hairline but no hair on the top of my head. It only got worse over the years and in 2006 I could not deny it any longer. I had to start wearing a hairpiece. I do not need a full-on wig, only a top piece that clips to my existing hair and blends in with the rest of the hair I have left on the sides of my head. Trust me when I say that it was so traumatizing that I didnt date, I wouldnt go out with my friends, and I wanted to hide away and never leave my house. Once I got my hairpiece the world changed for me. It was very expensive, and you want to get a very good quaility wig or hairpiece when and if you decide to go that route and you need to buy two of them and always have a back-up wig in case something happens to one of them. Good quality hair makes a big difference. No one knows that I wear a hairpiece except my family and my best friend. No one at work suspects a thing. I wear my hair long and straight and just got a new hairpiece with bangs. I love the bangs and its much easier to deal with. I am now 48 years old. You must be very young if you are just starting college. That is traumatic for sure. I dont think its rude for you to wear a cap of any kind when you are in school or anywhere else for that matter. It does however sound like you will need a wig very soon so I want you to be prepared and start researching your options and find a hair replacement salon/establishment that uses real human hair. Folea brand hairpieces and wigs are about the best you can buy now. They are very expensive but well worth every penny because they are so real looking and undetectable. This disease has affected my life in so many ways. I am paranoid each and every day that I leave my house with my hairpiece on and getting through my workday entails checking my hair in the mirror at least 100 times in 8.5 hours. I try to avoid windy weather and outdoor activities, which limits my social life somewhat. I did attempt to take a motorcycle ride with a friend when I initially got my first hairpiece. He had no idea my hair was not real. That turned into a disaster trying to wear a helmet. It didnt work. So I limit myself to what I can and can not do, and that is just something that I struggle with personally. I wish I were the type of person that could say "this is who I am, this is my hair, and I dont care what anyone thinks", but I have to work and be employed and I can not work where I do with my hair the way it is naturally. Ironically, I work in the medical field at a hospital where you would think this would be accepted, but my job is very high profile and I am in meetings all day long with physicians representing the hospital. They can not have a bald woman in this position. The world is not very accepting of bald women and that makes me mad. I went to therapy for awhile to try and deal with this disease but it didnt really help me very much. I have to learn to accept myself and love myself and I dont know if that will ever happen. Its extremly hard to tell someone you are dating about your hair because you dont know how they will react. I am seeing a great guy now that totally understands and accepts me and does not care about my hair.......but I still care about it and feel inadequate at times. Feel free to ask me any questions you want..........I am here for you.
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Vamppp...you echoed so many of my own thoughts. I so agree with you that the world doesn't accept bald women. No one seems to care that men are bald. The double standard really stresses me out. I also hate the idea of having to limit myself in what I can do. I feel like no one understands except for the people on this forum. Even my dermatologist told me that men also get upset about losing their hair...I don't know if he understands that people don't stare at bald men but they do stare at balding women. I wish I could be stronger but I cry a lot. Thank you for taking the time to post your thoughts.
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Hi Mariam - I understand, even the traumatic part. Try Buff Headwear - I love them! Traumatic doesn't even explain the effect Alopecia Totalis had on my life 25 years ago. Wow it's hard to believe I have been dealing with this since Elementary school through my late teens as Alopecia Areata, which then turned itself into Totalis when I turned 21/22 years old. Perfect timeing! Today there is so much more understanding and support for people in this situation. I am so happy to see the brave and confident individuals enjoying life instead of having a "secret" that has to be swept under the rug (haha)and denying life's pleasures and fun. That was how I lived. It killed my self-confidence and so much of the rest of my "self" went down the drain. I even teetered on the brink of Alcoholism in my mid 20s after I ended my relationship with "the one that got away" whom I am still friends with and He has no clue what I deal with. Somewhere I picked myself up, brushed myself off and kept hiding my secret, found someone who was an alcoholic, but didn't care about my "hair" and I married the WRONG guy! Yes, I am cleaning up that mess finally! and am out of control with confidence, not caring who knows about my "hair" it's me, period - end of story. I have Hashimoto's Hyprothyroidism and am boardering on Crohns as well. Now I just want to teach my kids our Higher Power made us who we are, there is no control over it just be the best YOU you can be. It's hard, it's embarassing, but in the end - the people that stand by you help - but it's you standing by you that matters the most. be your best friend and give yourself a pat on the back and do what needs done next, one step at a time, one day at a time. Hugs, prayers and a warrior & supporter!
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Permalink Reply by Simone on
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Hello everyone! Mariam, I totally identify with you. I have partial alopecia as well on my crown and I have shaved my head to try and blend better. I wear my hair out for my work hours but for my evening classes I wear a ball cap even on weekends. I try wigs just haven't found the right wig yet. It is totally devastating for me as I have always been a person who is totally versatile with my hair. I'm 35 now and have been battling this since 20 I suppose. It's gone from quarter size to the size of my hand : / as the person said above, our creator made us how he made us. The ppl that support us are all that matters. I know this in my heart, I just don't feel it everyday so I totally feel where you're coming from : ) This site is awesome! I'm glad you all are here. Maybe a nice wig or a nice prosthetic will do the trick ; ) Keep your head up beautiful!
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Permalink Reply by kitty on
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Of course it is tough as heck to lose your hair!!! But don't let losing your hair make you lose your life...
u
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Permalink Reply by janetparsons on
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i definitely feel your pain, iam 59 years old ,i hane had alopecia for 40 years now, i have the severe kind, lost hair from my entire body ,have beeen wearing a wig for 40 years, don,t let anyone elsedictate to u what you feel most comfortable with, there will always be people that will never understand your pain, god bless you and good luck, iam janet from newfoundland,welcome to alopecia world.
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Permalink Reply by Anne Vanderlaan on
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Yes it is a trauma and I am a therapist!
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Yes it is traumatic. However, it was more traumatic when I was younger. My AA started when I was 17 years old and I am now 39. Everyday can be a struggle. However, as you get older and life happens, the AA becomes less of a focus. Don't get me wrong, I am constantly aware of it. I just don't let it get me down like I did in the past. You have to find that strength within you to let some of the feelings go. If you don't you are going to lose out on some great experiences. Don't let the worry take over. I think that if you feel like you need to wear a hat or a scarf then do it and don't worry about others. I feel for you because I can remember how hard it was to be young and experiencing AA. It is difficult. And yes, we try and remind ourselves that it could be something much worse that causes us physical pain. The emotional rollercoaster of feeling sorry for ourselves to feeling guilty to feeling sad goes on and on. Like I said before, it gets better over time and easier to cope with. I hope things get easier for you.
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