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Please tell me it will get easier
I am 37 years old. I had my first experience with Alopecia 10 years ago, but at that time it stopped at large round patches and I could, for the most part, cover it up. I did the cortisone injections, but I'm not sure if that is what made the hair grow back. Either way, I struggled with it for about 1 1/2 years and was lucky enough to go through the last 8 years with nothing. Until three weeks ago. I noticed my hair coming out, a lot. I knew it was back, and with a vengeance. A visit to the Derm and a biopsy confirmed - AA. However, it's so bad now I would do anything to just have the "spots" but in the last three weeks I have lost about 70 % of my hair. It is thin everywhere, I have patches all over, and I can no longer cover it up. There is hair everywhere, I cry all of the time, and I honestly don't know how I'm going to get through this. I know I"m heading to AT, and I know I only have probably a week until I have to shave my head. I don't even know where to begin, or how to get out of this dark hole I am now in. I would do anything to turn back time, to get rid of this awful disease, but I know I can't. I know I need to stay strong. I am a mom, a wife and I know I need to fight this, but I'm struggling. I haven't left the house all week and haven't even left my bedroom some days. I am not eating, and I just sit and clean up my hair and cry and feel sad. I know I need to get a wig as I know there will be situations when I need it, but I don't even know where to begin. I don't have many friends and there is no way I have anyone (besides my super supportive husband) that I will tell about this. How do we do this?
Replies to This Discussion
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Permalink Reply by Stacie on
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I am so sorry that you're going through this. You are not alone. You have lots of alopecia sisters.
In terms of what you can do to start coping....talk to your dermatologist -- and maybe the hospitals in your area -- to see if there are alopecia support groups in your area and/or therapists who have experience with women's hair loss. Sometimes it helps to talk to people in person. If you feel able, you may want to talk to your hairdresser -- many hairdressers have clients like you.
Three weeks is not a long time -- it is okay to grieve, and you need to be patient and kind to yourself and recognize that it's going to take some time to get used to a potentially permanent change in your life. That's okay to take that time. When you feel ready, consider trying some wigs -- even though it's not your bio-hair, it's still yours and you will eventually get used to a wig. Once you get over the initial shock of seeing a different version of yourself in the mirror, having a wig may provide you with the jolt of confidence you need to start getting out of the house again and getting back to your routines.
For wigs, it's all about education and experimentation. There are lots of websites that you can read to learn about different types of hair and caps. There are blogs and videos. Educating yourself may also help make you feel more in control.
You will get through this -- truly, you will. Take it one step at a time, let yourself get support from others, and let yourself go through the feelings.
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Thank you, Stacie. I was able to find a support group that has a meeting in a couple of weeks so I hope that I can find at least one person there that I can talk to and become friends with. I think I need someone with Alopecia as a friend just to help me.
I have maybe 20% of my hair remaining today. I know I need to shave my head, but for some reason I can't do it, not today.
Thank you for your support and kind words, I truly appreciate it!
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Permalink Reply by Alo-mom on
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This is a very trying time for you. Give yourself a bit of time to grieve but please do not let it take over your life. It seems you have way to much to lose if you give into this condition. First, contact the National Alopecia Areata Foundation in Ca. and get a hold of the names of support groups, or just a phone contract to talk to someone. I am a support group phone person in CA. you can call me and we can talk. When my daughter developed AU I went through all the same things you described. It was not any help to her. As a mom you have to stay strong. I took this condition by the balls, so to speak, and learned all I could about it so I could help my daughter, Then I learned everything I could about wigs. I actually traveled to Qingdao China to see factories so that my daughter could have the very best products. I then got active with NAAF and started to help others in anyway I could. You can friend me and I would be glad to help you in anyway I can. Been there done that and if I can help others from making costly wig mistakes or being taken advantage of in anyway, I am here. Helping others has helped me greatly to accept my daughters AU. I have to tell you she is living an amazing life, boyfriend, friends, parties, work and she finished college in the middle of this mess. She is my hero and you need to be your families hero. All my best ALO MOM
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Thank you so much for your response. I would love your help. Today I lost a ton of hair because I needed to wash it. I need to shave my head, but I just can't, not yet. I can't cover it at all anymore. I need a wig and I need something to keep my head warm and hidden. Do you have any recommendations on wraps, band, etc . . that will stay on and keep my head covered? I don't even know where to begin? I do a general search and there is so much out there. I don't want to just start ordering products to find out they will itch, not fit, etc? I need a wig and I have no idea how to begin. I'm doing as much online searching as I can, but I have no idea what I'm doing. Is there such thing as a "general" wig that you can recommend ordering online? I am in the process of finding a wig shop and I will pay what it takes to get a good wig, but looking for something perhaps to get in the mean time? Just to wear even under hats or something. No way can I leave my home now without something on my head. I'm a mess. This is such a terrible disease. I can't stand looking at myself in the mirror and I cry so much. Please, any help you can give me would be so much appreciated. Thank you!!
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Permalink Reply by Rachel in WV on
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I am so thankful you have a super supportive husband! Having someone supportive is the key. I won't lie and say it will be easy. It is a day by day process of learning to cope with a very emotional issue. I have found that as time goes on, it does get easier. I am not at a total stage of comfort yet but I am working daily to overcome my emotions and be the most productive and happy me I can be! Prayer and supportive people have helped me on this journey. I am very blessed and thankful to have people that love and support me daily.
Hugs and Prayers to you! I know in time, you will cope and feel better about yourself!
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Thank you for your kind words. It is so hard. Every minute of every day is over confused by this damn Alopecia. No matter what I'm doing it's on my mind. I need to shave my head, but I just can't yet. I don't know why, I can't even begin to hide it and I walk around in a hat, I need to get something to help keep my head warm and hide the hair loss, do you have any recommendations? I don't even know where I begin. Thank you or the support, it means so much to me!
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I have purchased items from a website called headcoverings. They have cute ready tied scarves.
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Have you purchased any beanies or pull on hats from this site?
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I know how you feel. I was in a pretty dark place for months. I don't know if it gets easier or that you learn to accept it. Either way, life goes on. Headcovers has lovely bamboo hats and turbans that are very comfortable and very cute. There are also numerous YouTube videos that show how to wear stylish headscarves. You may also want a scarf pad (Headcovers) to add bulk and volume to your turban and scarf. It will also keep your head warm. Hang in there!
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Do you have a hat/beanie/pad that you could specifically recommend? I need to get something, asap. There is just so much out there that I want to be sure I order something that will actually work and be comfortable. I need to shave my head in the next couple of days, but can't until I have something to put on. I don't have a wig and don't know where to begin with that, either. All of this has happened to me so fast I don't even have time to process any of it.
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The bamboo hats by Cardani are great! I have a small head and these fit nicely without being too snug. The scarf pad is good, too. I had to take it in a bit because it was too large. I wear it e very day under my scarves and hats or turbans. I order from Canada and the delivery is quite fast. Take your time with the wig. Visit wig shops to try some on but don't be pressured into buying one that is just OK. You need to feel beautiful in it. It gets easier but it takes time. I hope your husband and kids tell you that you are beautiful each day.
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Sorry you are going thru this. Your feelings, grief are understandable given the recent loss. When you feel up to it, contact Alo mom, and have her help you with ordering a quality human hair wig, It is very confusing (so many systems, false claims ) If you can buy a decent hair system, i think it will help you to start to feel better about the situation. it is traumatic,life changing and frustrating. From my own experience, if you can afford it, get yourself a human hair wig and hold your head up. I think it's very hard on a woman's self esteem When i can afford it, i am going to get a good human hair wig, and feel better Best of luck and continue to stay on the web site for support and advice. it's so important to know that you're not alone with this problem Lauren
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