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How to deal with setbacks when dealing with AA?
I've had AA for over a year now. Lots of downs, some ups. Lots of regrowth, lots of hair loss. A few months ago, maybe around September, I thought my AA was on the way out, because I had all these new hairs, and no new patches. Woo! I said to myself. So that, coupled with my HH wig, kept me pretty cheerful and positive.
My growths stalled around Dec and Jan, but my dermatologist said it all still looked very promising, so I stayed positive and ignored my AA as much as possible - just went about, and lived my day as well as I could.
I can't really figure out if anything changed between the summer and now, but I feel like I've fallen back in a mental, emotional and physical hole again, similar to my terrible coping back when my AA first came about. Seemingly over night, I woke up this morning with a lot of loss and some new patches - a lot of my eyelashes are gone, a lot of one of my eyebrows is gone, and there's about two-three faint patches developing. The most unsettling is the one straight on my forehead hairline. And although every time I was my hair, I see lots of loss... only very recently have I seen my regrowths falling out too, which has made me even more upset, and emotionally compromised.
This "resurgence" of AA has totally messed me up emotionally. I feel very terrible and gross, for lack of better words. I feel like I must have done something wrong, even though rationally and logically I know that this is the nature of AA - unpredictability. I just feel so upset, and unhappy. Kind of like the floor under me is suddenly gone.
I just don't know how to deal with this - I feel like I can't even process, so I can't figure out how to move forward from this.
Replies to This Discussion
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Permalink Reply by Rose Marie' on
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Hi
Focussing on the regrowth and loss of your hair is normal but it also has it's own set of issues. When hair grows back you are happy when it falls out you are sad. Often people will say good on you ...your hairs growing back and just the opposite when it falls out. When you are feeling a little fragile like you may be at the moment this sort of sets up the thought process that you are winning or loosing. You are doing neither. You have alopecia areata, which is a unprecitable prococious condition which you can't control at all. So, please do your best to not focus your thoughts on trying to be able to control this condition. What you can do is focus on what you can control, like how you want to present yourself. I understand that you wear a wig...maybe a new look may be helpful. Have a look at other alternatives, scarves, hats etc. Think about how you want to handle your eyelash and brow loss. You may not want to do anything or you may like to start looking for lashes and brows. Become proactive around what you want and how you do it.
I understand that this is difficult, I also know that you can do it.
Hope this helps.
Rosy
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Permalink Reply by Debbi Fuller on
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I feel badly for you that this has happened to you. It has actually probably happened to most of us during our AA journeys. I don't k now how to make you change how you react to it, but that is what you have to do. You are not in control of this and feeling like you 'did something wrong' is a waste of your psychological energy. None of us are in control of it. What we ARE in control of is how we deal with it. Being a part of forums like this is very helpful because you will hear from a lot of people who have found ways to deal with their AA in a variety of positive ways. One year isn't much time either. I think it takes a while to accept this disease and to come to a place of acceptance and hopefully, even joy. Good for you for reaching out.
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I'm going through something similar at the moment. I've had AA since I was about 7 and I'm now 24. It became too severe to hide when I was about 16 and I've worn wigs ever since. However I now have lots of solid regrowth, about 80 percent and got my hopes up it was all just going to resolve itself and be ok. Although over the past few weeks I have new loss! And the most traumatic one is right above my forehead just above the hairline, somehow the ones at the back just aren't as upsetting as that one. I'm so sorry you have to deal with eyebrow and eyelash loss, I lost half my eyelashes over a year ago and although they are kinda growing back they are only a few mm, that was almost as upsetting as losing all my hair! And I haven't even mastered false eyelashes because of it!
I hope that you get through this tough time, my advice is to just take things one day at a time, we all know looking to the future can be scary and unpredictable with hairloss. But no matter how bad things are there's always hope :)
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You are new to this and therefore it is natural to think and hope that regrowth means the end of AA. Truly it will never be the end. You must come to grips with this, just as a diabetic or anyone must do who has a chronic condition. Once you accept your new body the happier you will be. Continue with the wigs, for many years I wore false eyelashes and penciled in fuller brows. I woke up just yesterday looked in the mirror and said to myself' well half of my left eyebrow is gone. I didn't dwell on this, I penciled in a more complete look. I then forgot about it and went on with my day. Oh I discovered that I actually look better with false eyelashes than when I had my own. Find acceptance within ,don't dwell. Smile and carry on. The more you think on your problem the worse you will feel. Good luck and God Bless
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In my own case,a very rare disease caused my alopecia & NOW this same disease is desperately trying to ''steal'' my TEETH. It is relentless & ''hell bent'' on taking my TEETH & I have had to fly to NY for specialized high risk complex
custom dental restoration/reconstruction/oral surg NOT available in Fla. I had to take an UNPAID LEAVE from my JOB .
The news last week from my NY dentist that my disease once more is threatening to take my TEETH was devastating,
I can deal with WIGS but there isn't such a ''easy'' solution for TEETH ! -This recurring battle of the Teeth is like a SETBACK after tons & tons of costly procedures last year to try & save my TEETH ! -I am hanging tough & being patient & accept that the battle will be ongoing-there is no cure for me. -Marsha
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Dear Epo:
Your beauty is within yourself, not out.
Believe me, I know how you feel. But this AA is teaching me to see myself in a different mirror. I discovered that hating the person I see in the mirror, feeling depress and becoming a victim of something I cannot control was not helping me and hurting my loved ones.
My who son lives in Italy and was visiting me, told me, “Mom, when I look at you I see your heart, you are a beautiful soul, but if you are so unhappy you need to learn that if the life give you lemons you need to make lemonades. Here is a long scarf I bought for you, use your imagination and show me your strength. ” Tomorrow I will call you in Skype and want to see how you make lemonade.”
Let me tell you, it was a real challenge. I did not want to fail him, because in our most difficult times we always helps each other and keep going.
I took that long beautiful scarf and wrapped around my head like a “Taliban” the people in the Middle East. Then I took an old wig, cut out the front of the wig and sew to the scarf, like a small bang. Then wrapped around my head and went to visit my neighbor, (they do not know I have AA), chat with them for a short time and they said, “WOW, you look so European and fancy”. Then I explained that my son gave me the scarf and I was looking for a way of using it. So, I am learning to make lemonade.
Remember, the most important part of you is within you, let start making lemonades, summer is coming soon.
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Permalink Reply by Pam D. on
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My new doc checked my vitamin D and is going on the theory that it could be related to my hair loss (my levels were extremely low). Maybe you could explore the possibility because your hair loss seems to occur when you are likely spending less time outside. My dermatologist has me taking 10,000 u of vitamin D and wants me out in the sun some art of every day.
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Permalink Reply by Donna on
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I want to send a word of encouragement. The first year of any change is the most difficult. I have been living with AA for 7 yrs now. The great thing is this amazing suport system. I just found it yesterday!!!! Already I'm feeling the strength of every response. The last 7 yrs I have been alone in this struggle. I walk around Boldly Bald and pretend that no one is looking. I didn't know I had this type of strength. We never know what wer're made of. This time next year you'll be that much stronger.
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Way to go Donna! When you discover your own ability to find strength inside yourself, it can be very liberating! I wear 'hair' most of the time because it makes me feel 'pretty'. But when it's inconvenient, I don't! Choice is the name of the game but the choices need to be yours!
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Please keep positive, I have had already 5 flares up & keep positive :) do you remember what you maybe ate or felt extra stress the days before?
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Permalink Reply by Gale Moorman on
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Hi Epo I know just how you are feeling. I've had alopecia for over 20 years and I don't think I've had hardly as many growths and regrowths as you'd had in the year or over that you've been having it. Well you are being real by stating that you know AA is unpredictable, which it is. I had 3 sons throughout my alopecia. The 1st son I still had the patches but 2 yrs later I had twin sons and after two months of having them I took a shower and my hair started falling out in clumps. Truely devastating. I knew I had to keep it all together for not only me but my husband and my 3 little sons. Some days were better and some were worse than others. Day by day you have to go through with this unpredictable condition and I managed to. I didn't care for wigs so I took to having a scarf and a sport cap. That's what I wore then because I was very athletic and played tennis at college before the kids. I continued wearing that and just did what I had to do; graduated from college, met a guy who didn't really care or was scared off by my alopecia. Had a chance to work at the US Open Tennis volunteering and later got it as a paid job still wearing my scarf and hat; players don't care, boss didn't care, players knew me and felt comfortable as me being security for them; I have alopecia totalis now and had it for tons of years; I was laid off at a college over 10 yrs ago, I got online someone suggested me to start my own cleaning service after I did messenger foot delivery which wasn't enough money and totally exhausting; glad I started my apt. cleaning service; now doing my own podcast radio not about alopecia but about tennis which involved over 30 yrs of my life. Still no hair but hey I'm doing what I like and loving it and more to come. Just take it day by day and do what you feel comfortable doing; you'll make it. If you need more advice feel free to get in touch. I don't get on here much at all and go to a month AA support group. Feel free to contact when possible. Hope I've helped.
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Hi everyone my name is Janice and I had alopecia since I was 9. It was always in patches I would get my injections and the hair would come back. After the birth of my son in 2003 every strand of hair fell out as well ad my brows and lashes. ever since I have been wearing a wig and going through terrible depression. I just want my hair back
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