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My alopecia is back...and I can't bear the thought of going through this again. How did you cope?
I developed alopecia areata just over a year ago.
I lost most of my hair, went through a number of wigs, and then finally February this year I had the courage to take off my wig as my hair had all grown back.
Just last week I went to the hairdresser for the first time since it all fell out, because I finally had enough hair to cut! I was so happy with how I had recovered. I forgot I even had this disease.
And then two days ago I got out of the shower and noticed a bald patch on the top of my head (somewhere I had never lost the time before), and as I looked closer I noticed there was hair falling out all over.
I am broken. I can't believe this is happening again. I am back on steroids that mess with my body and back to hats that cover what I've lost.
This is so much worse the second time. I stayed strong the first time, but now I have lost hope.
How did you guys/girls cope with going through this a second/third etc. time?
Replies to This Discussion
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Permalink Reply by Tallgirl on
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At first? Sullen. Angry at God. No smile for my 40th birthday photo at Monkey Wards. (I had had AA in my youth, regrowth for 15 years, and had also forgotten about it.) But, I found the darlingest head-wrap through one of the www.naaf.org vendors, and wore it for the birthday dinner...which turned out to be a surprise party my ex had arranged at a steak house with a canyon view. The photo turned out great, a bunch of friends who had been in my address book were there, and I realized I would be okay. I got nice wigs with the help of my parents, raised the kids, and went to work even though this eventually turned to AU, then AT. I figured that I had really been able to do a lot of amazing things in life (move to California, travel overseas, enter art shows, marry and become a mom), and had more I could do, so....I stopped all reminders of alopecia like shots and creams, and used the money instead for nicer wigs and hats. Better food. Starbuck's. Life.
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Permalink Reply by alamogirl/ aka Judy on
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Tallgirl, I KNOW I would love to meet you. Thanks for your down-to-earth posts and encouraging words. Blessings.
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Permalink Reply by Turtlduv on
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I hear you. This is my second bout with AU and it is devastating. You grieve for awhile and then you realize I can keep crying and hiding and let life pass me by or I can put on my eyebrows, eyelincr and wig and a happy face. Enjoy life because the past is history, the future a mystery but today is a gift, the present. We only have today so we must make the best of it. Blessings and love to you and remember God is a ever present help in trouble,
call on Him.
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I'll pray for you Laura. It sucks but it's just one of those things you have to get through. I'm sorry
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Permalink Reply by Fox on
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Hi there! I can only tell you how i cope.Hopefully it will help,or give you a new perspective on things.So,here we go! :)
It is a process you're going through and the outcome depends on how you deal with it.
Eventually you'll get tired of feeling bad and wasting precious time. **Be kind to yourself**It is normal to feel sad when something that you don't like and don't have control over happens to you,but you don't have to let it get you down or prevent it from living your life to the fullest and feeling good about yourself.You are beautiful,young and smart and have a lot of things going for you. **Your hair does not define you.**What defines you is the person you are and the choices you make every day.** That is something that you can choose and alter in a way to work for you,not against you.Gradually you will learn,grow and adapt.
Look around! For example on alopecia world...I see tons of people with hairloss that I like and/or admire,looking good,live their lives and who I can relate with.
**Do I admire or think less about them because of their hairloss? No! Then,why should I think less about myself?** If other people can live a full life,then you can too.Allthough you find your situation hard to cope with and are unhappy about it,do try to relativate in a way that makes you feel better.Is this the worst thing that can happen to someone in their live? What is losing your hair compared to losing a child,health,a parent etc.?
These are modern times with lesser taboos,people can choose to walk around bald if they want or have too and we have more and more better looking wigs,caps to enhance one's looks.Many of them even looking better with their new hair then before.
The only thing is they're a bit of a hassle sometimes in practical sense.
When I do feel bad,I allow myself to feel bad,then do something that will help make me feel better,don't take myself seriously and laugh about myself,helpe a person or animal,learn something new,look at someone whom I admire or doing something really well,listen to music,have a good meal,see friends,put on makeup,dress flashily anything... and I also sometimes blend in a little of fake it till you make it.
Act in a positive way and soon your emotions correspond to it.
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Also,be smart,don't let your happiness or selfesteem depend on something that you don't have,in this case: hair..but on many other good qualities that can build you up and invest in them.
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hey laura,
I have AA. i've suffered from this since i was 15 but luckily my patches were hidden under my long hair so noone knew i had alopecia. However, when i was 21 and at university, i developed a little round circle right in the middle of my parting line. For me my hair was literally my crowning glory, people have always commented on the color, texture and condition of my long straight hair but this was just one big knock back.. i went to the hairdressers who suggested tht i change the way i style my hair. i wasnt too happy with the sound of this but actually it worked wonders for me because hiding it meant that i couldnt see it as it grew bigger and biggger. I actually forced myself to forget about it because by hiding it it meant that i could jst pretend that it wasnt there. I think this is why after a year and a half my hair fully grew back in this area. The main problem with having alopecia is that the effects are twofold- you are stressed so you often develop new hairloss but then the hairloss makes you even more down which doesnt help the regrowth process.. i know your dermatologist and family probably keep telling you that stressing will make things worse and i fully understand how frustrating this can be to hear but it is acutally very true. Apart from changing the way you style your hair, one other thing you could try is getting some castor oil and gently massaging this on the bald spot at night or wherever you feel you are losing hair. Then cover your hair with a showercap and let the pores sweat over night. A lot of people notice positive results through this method. I'm 28 now and my last big bout of AA was 4 years ago.. its on my crown and has not fully grown back yet but i go about my life by doing whatevr i can to cover this up ie pining my hair slightly to the side or backcombing because i try to not stress myself out about it too much to maximise the chances of it growing back. I hope this helps :) I am actually running a study that looks at the effect of coping with alopecia areata and especially the impact this has on young people's self esteem, daily living, social interactions and overally quality of life. As a fellow alopecian i feel that we need to be raising greater awareness of the difficulties that this condition can pose over our lives. If you are interested in this study or know of anyone who wouldn't mind completing a short online survey for the study then please go to the following link: https://cityss.qualtrics.com/SE/?SID=SV_a5FE0lG9B7iHh08. Thank you and please message me if you need any support with your condiiton as i have over 13 years of experience of living with this. xx Be strong and stay positive xx
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Permalink Reply by LitchKing on
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I'll go ahead and hope in your case. It is painful but it's one of those things you need to survive through.
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Permalink Reply by Christine on
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Laura, I've been through this too many times to count, I've had AA for ten years now. I have a pattern called Ophiasis, which causes me to lose mostly all underneath hair, near my neck and above and around my ears. I was able to hide it pretty well for the most part, I had my hair fill in several times, but have started only having the white hairs on the under parts for about 4 yrs now, they never turn into regular hairs anymore, and now over the last 5-6 yrs I've started losing in spots on my upper hair, at first these areas would grow back as normal dark hairs, with the help of minoxidil, but I've recently developed a sensitivity to Minox, and can't use it anymore, I now have large spots on top that are spreading. Each time I would go into a losing period, I'd feel helpless, and scared because you just never know when or if it will stop. I had been holding pretty good for a few years now, but with this recent big loss, and still losing I've made up my mind that like tallgirl, I'm done being all worried where AA will take me this time, or trying drugs that do more harm than good, because we are usually otherwise healthy, It just dosen't make sense to do anything that messes with the body as a whole, I'm not totally against treatments, as long as they pose no other health risks. I'm seeking the advice of a really good wig salon in Seattle, that specializes in hairloss, hoping to get some options for myself. I feel stronger knowing that I'm in control now not the Alopecia. Instead of being tossed by the winds of AA, we can still have a choice in how much we are going to let it play havoc in our lives right? Hang in there!
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Permalink Reply by Sunflower25 on
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I was on steroids the first time around - never again. What a mess they made me! I had diffuse AA at the time and I really had a hard time with it.
I went three years before seeing a spot. I cried for like an hour and then got over it. Idk what it was, but I just don't seem to care about it anymore. Since that spot I've gotten a few more, but I just try not to let it bother me. I just check my head in the mirror in the morning, make sure everything is covered, and go on with the day.
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Permalink Reply by Kimberly on
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Hi Laura ~ I know how devastating it can be - been there, done that! I've been dealing with some form of alopecia for 30 years now. I have been AU for the last 15 years. You've already had many great replys to your post, all I will say is, you take one day at a time, get through it and on to the next. Try to focus on all the positives in your life - there are so many people who have it worse, ie: lost of limbs, etc... I honestly feel blessed - I have so many things to be thankful for, my health for one. loving family for two, and so on.... we can't control our loss of hair - but we can control how we react to it! try to stay positive - put on a smile when you feel like crying. (and sometimes you just need a good cry) God Bless - better days will come! Hang in there!
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Permalink Reply by Klo on
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Hi Laura. Im sorry you are having to go through this again. I lost all my hair about seven months ago and it is finaly starting to grow back in. I am afraid to get to excited because like you, I will be devastated if starts to fall out again.
Reading your story even made me feel a little teary eyed. I have been able to cope thanks to this websight. There are a lot of great people on here and after reading there stories I am able to gain strength and carry on!
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