Alopecia World
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It's not the end of the world...But it sure feels like it
I feel betrayed.
I am now a recluse and refuse to leave my house unless I have to. I just no longer feel comfortable being around people because I feel like a freak of nature.
Literally one day in April, I ran my hand through my hair and long strands came out. My roommate starts complaining about having to pick my hair up in the kitchen. A few days later I wake up and find two huge bald spots on either side of head. There are bald spots everywhere and literally feels like my hair is trying to jump off my scalp. I had a complete and total meltdown and have been crying every day for the last two months because I never thought I would have to deal with this again.
This isn't the first time my hair fell out. It first fell out when I was 12. It was slow to fall but by eighth grade, I shaved my head and wore a wig. The most miserable year of my life. However, I had full regrowth a year later and never had to deal with it again.
That was 15 years ago! Until now, I had long hair past my shoulders that people always complimented me on (black people have this thing about "good hair" and long hair). I loved my hair and always took special care of it because I was thankful and grateful that it grew back. I started taking multivitamins and biotin to help it grow a few months ago and I honestly think that is what triggered my alopecia to come back.
So hear I sit at home, declining invitations and keeping to myself. The thought of having to shave my head again and wear a wig makes me depressed. I really need some support to help me through this. Thanks for letting me vent.
Replies to This Discussion
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Permalink Reply by Tallgirl on
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S, I had my first alopecia areata episodes 5th grade (one or two spots, hidden with long hair pulled back and barretted), 10th grade to 20 (succumbed to falls, then full wigs before miraculous regrowth AFTER STOPPING THE SHOTS AND PILLS at college). I almost forgot about it after I spent my 20s traveling, dating, painting, dancing, etc. Then, after marriage and kids in my 30s (when I tried birth control pills. Doctor made me stop them immediately, but the hair loss continued.)...MASSIVE hair loss again...brushloads...gone in two months, AU followed. Devastated. My 40s were spent dealing with my kids having to defend me to their friends, my students harrassing me in my first class of my own as a teacher, administrator not supportive (lawsuit involved), and the chickening out of a husband. After a dermatologist told me that at my age, duration of alopecia and degree of hair loss, I would probably never get my hair back even with shots, I quit all doctor appointments and just got synthetic wigs in new colors and styles to reinvent myself.
The 50s have been spent getting on with education, career, empty nest, being single again, joining a new faith, meeting others with hair loss, and planning for the 60s (coming to my neighborhood VERY SOON!). People in education and church have to be nice (ha ha), and artists/old friends still love me. Grandson is great, and has seen me bald when it is hot in the house. It is NOT the end of the world.
You do not have to shave your head to wear a wig, awesome hat or scarf. Get out there and do NOT let YOUR decades go by with no stories to tell. If you are calling me a freak, too, then I will tell you that THIS "freak" has found pockets of fun in new places. I'll "friend" you so you can see some pix of places to enjoy even when wearing something other than your own hair, and hear some songs (on videos at the bottom) that will make you think.
Accept the invitations from those YOU love and trust...take them on your journey with this. Talking helps. YOU can have the parties and potlucks or movie nights at YOUR house, you know!
By the way, I have left on a bunch of my blog posts and discussions over the last three years, and some of the best folk here on AW have had input for some of the female questions about life with alopecia. Go read and contribute!
TG
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Permalink Reply by Essence on
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awwe man. i can't feel your pain because i've have some form of AA, AT & AU since i was 8!! but i can't imagine having celebrated having my hair back at one point, only to lose it again but you got this girl! i wish the best for you and i hope you find the good in wearing a wig. you can have so much fun with it. definitely get out there again and don't sulk at home so much. this isn't something that's in your control and whoever can't accept it, doesn't need to be in your life. and you are beautiful (your profile picture). you can do it. (:
xo -Essence
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Permalink Reply by Gina on
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I am new here,I just lost 90%of hair on last 3 months! I feel the same as you! I don't leave house and all I do lately is cry ! I have two young children and I try my hardest to get up and dressed.most days I don't tho
I've ordered a wig and I'm waiting anxiously for it! Praying it helps in some way!it's causing problems in my relationship! And same as you complains about my hair everywhere! He don't understand how much it hurts when he complains about my hair
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Permalink Reply by Brandy Snap on
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Venting DOES help. And this is the best place to do it; where people understand because we are just like you. Crying helps too, but after a while you run out of tears and have to just take a deep breath and carry on. There's always hope that it can and will grow back (and if you're like me, it may come and go several times). Alopecia may not hurt physically, but it is emotionally devastating (like an emotional atom bomb).
Tip: Roommates are replaceable. ;)
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Permalink Reply by Devin on
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Yes I cried for days and months on end because I kept losing my hair and getting bald spots but eventually I just stopped because I couldnt cry anymore. I do wear a wig right now and ill be a senior. I had to wear a wig in 6th and I had my hair for 5 yrs but I had spots here and there but I could cover them up but when 11th grade started I had to wear a wig, now my hair is growing back slowly and I am happy because I just want to be normal and be like I use to be and not have to wear a wig they get so hot, especially if your in sports . But I try and stay positive as much as I can.
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Permalink Reply by Emory on
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I think you have to give yourself time to grieve, but then you have to get over it and move on with your life. When my hair fell out, I felt like it was the end of the world. But I have a practice full of cancer patients, a 2 year old son, and a husband and family/friends who love and support me. I did not want to leave the house last summer but after I realized that things weren't changing, I started to live my life again. I stopped being embarrassed about my disease and realized that people don't really care as much as I thought they did. I think that once you get a wig and get comfortable with your "new self," you will feel better about yourself.
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Permalink Reply by BlueandPink on
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As a female it sucks to lose your hair, and it takes a real blow to your confidence.
For me personally, I had cancer when I was was 21, and lost all my hair, on my 5th year anniversary of being in remission, my hair started to fall out in patches, and in 3month I had lost 65% of my hair, and 2 months later it progressed to AT. I had two semesters left to graduate from undergrad. I went through a type of post traumatic stress from when I had lost my hair from cancer.... and it felt like the cruelest joke was being played on me, to have my hair long again and lose it....(because many people automatically think I had a relapse)I was so depressed, I ended up dropping most of my classes...I have had a lot of obstacles, and at the end of the day I just look back I feel like a Silly little girl,that my life is being postponed and stopped because of my hair!!! ?
Know one will ever get what we go through unless it happens to them!!!
Its really hard to listen to people when they complain about little things like im getting old and I have gray hair..and etc. and you feel like saying SHUTUP! I can fix your problem in 5min with $5!
So the Biggest thing that helped me was my bestfriend, who sadly lost his brother in a blink of an eye, (he was murdered around the same time i lost my hair). When I was around him I coulndt mention how unhappy I was, because it seemed so little and juvenile. But what I admired about him most was that he didnt allow his lost to crumble and paralyze him or his goals, and he continued on more focused and determined to finish his goals, and now hes in Pharmacy School.
My goal is to become a dentist, I graduate at the end of this year with B.S. and from there the skies the limit!
************
P.S. I see a psychologist, and when I express how I felt regarding being scared to get in a relationship because I would need to tell the person about my hair issue.....and i wouldnt be able to handle that or rejection......she challenged me to meet someone randomly and eventually tell them...A year later, I felt confident enough to take on her challenge!
The man that I befriended didnt care...at all about it,...(and hes a hottie with a body!!!(i always felt after i lost my hair.that i was going to end up with a fat bald guy who was ganna love me for me.lol)....... I got a super confidence boost, after i told him!.... and it made me realize im the only things thats going to hold me back from enjoying life....You have to want to be Happy and do everything in your power to get there! otherwise you will become complacent living in the shadow of your wig!
When I lost my hair i felt and referred to myself as a monster. Dont get me wrong I look hot with wigs, and get asked out to dinner almost everyday, BUT in my head I felt like you think I hot but im not, i look like two different people...ones super hot and one looks like lil monster.
.......nothing has changed i am still bald.......except now I dont think of myself as a monster and I dont let those words or feelings occupy my thoughts.....
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Permalink Reply by sharon on
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that is so true,im finding more and more courage each day after 5 mths,i had AA,and lost most of mine,so i ended up shaving the rest off,although i have fluffy hair growth all over,i still dont really know where its going and why its happened. i can only but watch full wait,and where my wigs.its really hard,but i know there are worse people out there suffering. and no medical person has no anwser.sharon x
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Don't dis the guys who put on a few pounds. After 40, most people do. As y'all have been saying, it is what's inside that counts...right? If you want men to love you bald, be ready to love THEM bald as well! Someone liking you for YOU instead of "hottiness" means a lot when the looks-only folk have retreated into old age and griping. People with spark and smarts come in all sizes.
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Hey beautiful,
I was diagnosed in December 2011 with a condition which causes scarring alopecia- so it means my hair will never grow back in the spots that I've lost it. When I first found out I cried everyday too like all the time apart from when I was around people that didn't know about it if that makes sense. My hair was my life and I felt like the only good feature that I had. I cried myself to sleep, I cried on the way to work, I cried at work and generally whenever I was alone- so I can feel your pain!
I also hid away and it was the worst time coz it was Christmas and New Years and my nephews birthday but I was so lucky that all these things were there. I knew I had to brave these occasions and people that didn't know about it and act normal and boy that was hard but I did it- you can too.
One thing I relaised was that no matter how much I cried my hair wasn't coming back but even worse I felt like crap. I also realised how much fun I had in the company of others and how much I laughed even when I felt like it was a crime to laugh. My advice is don't turn down these offers or invitations and go and have a good time. They say alopecia is stress related so go and destress! You will feel much better and it will get you out of the 'depressed' stage.
With regards to the wig scenario, I also know how u feel about that. At first I was against it but then when I realised that I love hair and need it I got a wig. I get paranoid at times that people know that I'm wearing it coz they ask questions and as I'm of Indian origin 'good hair' is very important so people notice slight differences straight away but I deal with it one comment at a time. Just like I am dealing with life one day at a time....maybe you should do that too?
Also don't forget you dealt with it before when you were younger and you will do it again xxx
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Permalink Reply by shimmyshimmyya on
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Hi All,
Thanks for the kind words and support. It's still surreal to me and I'm taking it day by day. I've been having a lot more rough days that not and I just don't look or feel like myself. I feel this isn't me and I admire those who have live with it and accept it. I don't think I can though. I know I can't control it and I have to just have faith that it will go back in to remission.
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yes it will eventually grow back its just going to take awhile. I have had AA since I.was 4 and its been along road for.me I have been teased and everything and I have cried numerous times but eventually I just couldn't cry anymore I.just let god take my hand and help me through it, I have prayed to him and he has answered my prayers because my hair is finally growing back but slowly. I agree with everyone that is so strong and don't care it takes a lot of courage and strength, I can't go out of the house without my wig on.I don't feel comfortable or beautiful in anyway shape or form I feel disgusting and plain ugly without wig or makeup, I am real lucky my boyfriend don't care and loves me for me but idk I feel ugly and not pretty. Please get back to my message. Thanks.
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