Alopecia World
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Recently diagnosed and struggling
Replies to This Discussion
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Permalink Reply by Tallgirl on
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Take your daughter, mom and fiance with you to a wig store to select something you will love. If your daughter learns young that you can solve problems and make yourself happier, she will become more proactive herself. She will be watching how you handle the true strengths of womanhood. Make some good choices in front of her!
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Permalink Reply by Megan Jade on
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I have been where you are. Its not easy, in fact five years on (For me) i still have some days where i don't want to leave the house. But it does get easier, not using that as a cop out either. The moment i started to open up about how i felt, was the moment my load got easier to bare. I talked to my friends and family, brought a wig (Be warned they are expensive), learnt how to use make up and started to tell people that i had AU. Somehow the more people who knew and understood, made it easier for me. My support system was/is amazing. When i was first lost all my hair, i didn't leave my house. Didn't want to eat and really didn't want to work. I was depressed and felt so alone. This went on for eight months, until i decided (After my doctor told me the possibility that it wasn't going to come back) to live my life again. Stress caused my condition, but hiding myself away wasn't helping myself, living was. So five years later i'm happy, infact i think alopecia can make you a better person if you let it.
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Permalink Reply by Briannarenee723 on
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I ended up a few days ago opening up to friends and other family on Facebook. People we're wondering why every time I posted a picture I had a hat on. I did get a lot of support which made me feel better a little. I still get funny looks from strangers all the time so it's hard. It being summer and hot I think has made it hard because I wear my hat to the pool and so I get funny looks doing that. I think living in a world where people are so quick to judge others makes it difficult. I've had self esteem issues all my life and when I was diagnosed I was like seriously? Just one more thing to make me feel ugly. I've been trying real hard to stay positive for my daughter so that she understands that it is okay to be different.
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I very quickly lost all the hair on the top of my head, I got steroid injections last appt on 6/7 and my hair started growing back white and then stopped and then all the hair in the back of my head is falling out. I bought cute colorful hats but people always stare at me because it's hot out and I have a hat on. Sometimes I get looks of sympathy like people think I have cancer. I hate having to wear them. Like I just want to be able to walk out of my door, hair done all cute but I can't because I barely have any left. My condition wasn't caused by stressed, it just happened. My Dr said because my family has a history of other autoimmune disorders like thyroid and diabities, that it was most likely genetic. I see so many stories of women being brave and embracing it but I am just not there yet.
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Yeah...lucky me has family tree with asthma, diabetes, and arthritis. See the 2010 report online regarding the gene markers alopecia shares with these. One branch of my family had a person with it in each generation.
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I feel for you. I lost all my hair by Halloween 2016, maybe a few left strands at that time. It's DEVASTATING! No it's just not hair, it's so much more and in my case one more BIG thing to worry about. I have a 2.5 year old daughter and she pulls my scarf off all the time. She never says anything but that will come soon. She doesn't remember me with hair and I didn't take enough pictures with her when I actually had hair. So here I am about 9 months bald still so hurt and confused as to why this happened. I had a dream last night it grew back,short though, but I was so happy and then I woke up to my reality, a sick feeling creeping in that I will be like this forever. I went to see a dermatologist too but opted out of treatment. I need to find a way to get back to me, been researching things like crazy. I am here if you need to chat. No one will understand unless it's happening to them. I try not to get down because of my daughter, but it's so hard. I hate looking in the mirror. Oh yeah, and the sympathy because people think I have cancer. Uugh! I was always a person who didn't want to be noticed and now I just can't blend in and worse people feel sorry for me.
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I always feel like maybe I stand out more than I really do. We went to a hotel with a huge indoor water park the other day and it was the first time that I was around so many people without my hat on and I feel like I look worse with half my hair and half of me bald. I got a lot of looks and people doing double takes like "wait she really is half bald" there has been a few instances where my daughter has pulled my hat off in public because she doesn't understand why I wear it. I think she is starting to understand that mommy is losing her hair. She plays with a toy that has innerchangeable hair and she always comes and puts it on my head and says here is some hair for you mommy!
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Wow,that was brave of you. I don't think I could do it, not quite yet anyway. I just got back from Target with my toddler and I can't take these looks of sympathy and get this I was talking to an older lady about my daughter, ironic that she gets a lot of attention because of her curly hair and here I am bald,lol and the lady goes, "oh you don't have cancer?" wtf! No, I have alopecia but thanks for the suggestion. I know people are just making chit chat and that's fine, I'm not really even upset at the lady, I just hate the situation I am in. (But like we are reminded it could be worse) Yes I know, of course it could be worse, but it could be better too,lol. Like taking care of a toddler is not stressful enough and losing your hair on top of everything else. My daughter has these lalaloopsies that are bald and come with wigs, I smile when I see them. And her squinkies come with wigs and hats. (yeah not age appropriate, small tiny things and she's only 2.5, knock on wood) My daughter loves to take off my scarf and put it in her Minnie oven, the other day I was carrying her around Aldi's and she almost got it off,lol.
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HI,
I feel you. I had some minor alopecia areata experiences in my twenties which resolved quickly but this time around about 90% of my scalp hair is gone (34 now) after being very sick last year. I am a mom of a 3 year old boy and 5 year old girl and i am trying as hard as i can to hide it as much as I can. My daughter is asking where my hair is, will I lose it all, will she lose her hair. I have tried all the meds ect for Xeljanx which I may start soon. I like you am terrified - I can't let myself think of the future beyond a few weeks because the thought of not having hair again is TERRIFYING me. My husband is supportive but can't understand exactly how petrified I am. He keeps saying "I still think you're beautiful without hair" but really thats not the point. The point is I feel sub-human, or weird without my hair. Not me.....Its horrible when people tell you its just hair... it is one of the most pschologically difficult things to go through, and to cope with. I am used to having long thick brown hair and now, within a few months, gone. I can't help you much except to say I feel exactly the same. I haven't told anyone outside of family and friends. I have hashimotos as well so am very thin so I wear a wig so people don't ask me if I have cancer.....
I have tried oral steriods, minoxidil, methotrexate, and cyclosporine to no avail but am hopefully the Xeljanz will work.
I also found that my immunologist was a much better help to me then my dermotologist...Much more aware of the dynamics and options.
Im sorry im probably not much of a help but I feel exactly the same way. Its not "just" hair, its our identity.
Keep strong, easy words, but we gotta try to get through this for our kids, and ourselves, and don;t give up hope.
xx
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Thank you for our kind words. It may be just hair until you lose it and feel like you have lost a part of yourself. And I've told people, you can't judge someone on something or even begin to understand what they go through, unless you have gone through it yourself. And I've tried explaining to people all the dirty looks I get because I'm missing half a dad of hair. I get looks of disgust, looks of sympathy, looks of curiosity.
As far as medicine, I have done two different shampoos, a liquid solution I had to put in all the bald spots, two rounds of these little white pills, had to take 4 a day but they made me so tired I couldn't even get out of bed. I had to rounds of steroids in my butt and nothing worked so then I got the steroid shots in my head. It started growing back white with the head steroids but then quit, it was just enough to tell I had white hair and then it started falling out in the back where I didn't get the steroids. My Dr suggest light therapy where I go two times a week for 12 weeks. It's hard not to give up hone when nothing ever works.
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My son started to lose his hair in March too. And it's slowly become worse. He wont leave the house without a hoodie. He won't wear a cap Because is patches are low down near the neck. And spread randomly on top and sides. This is new to us and completely soul destroying. He's gone from a happy go luckily kid to a recluse it's absolutely heartbreaking.
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This past Wednesday was actually the first day since being diagnosed that I left my house without a hat. This past Sunday I made the decision to stop treatments and shave my head. They were getting expensive and not working. I don't know how old your son is, but no matter his age something I want him to know is this, "what you are going through is hard, but it does get easier. A month ago I was crying about what was happening and this week I embraced life and left without my hat. People will always tell you to get over it, don't. Hold on to how you feel because your feelings are valid. You have every right to feel the way you do. The biggest thing that I have learned through this process is that no matter what you look like, age, gender, race, small, big, hair or no hair, unfortunately there will always be people in this world that are going to judge you. The best thing you can do is embrace life and move forward with your head held high. Your hair doesn't define who you are. That comes from within. The other biggest thing I can say is not to hold in your feelings. Talk to someone, anyone. Even if it's a stranger on the internet on a site like this. I spent time crying in bed or in the bathroom completely devastated and it got too much where I had a big breakdown, spent an an entire day crying and sleeping and then woke up the next day completely different. That's when I found this site. It is going to be okay. "
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