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Dealing with the unpredictability
Hi All,
I've been having a hard time lately with my hair and the emotions that are tied with it. I've had Alopecia Areata for a little over a year now. It started in April of last year as a small dime sized circle and grew to about the size of an egg/lemon. I started getting cortisone shots which stopped hair loss immediately. But of course that was only temporary. Through the summer I still dealt with covering the spot but no hair loss, and it had started to grow back. Come October anther spot in the front of my head appeared. Treated it. it stopped falling out. Of course the back of my head(original spot) started shedding again. Shots didn't seem to help so I tried Plaquenil. That also seemed to halt hair loss immediately. I had a good four months of complete re-growth and no active areas. I thought I was out of the woods and could finally put this behind me. Well here we are again, and the back of my head is very active. While it isn't happening in circular patches the whole area is just thinning around the initial spot. I've decided to forego treatment as I do not believe it would be anything but temporary, it also takes time away from work to go to appointments, and it's money I'd rather be spending elsewhere. So here I am, crossing my fingers that it will soon stop falling out and I won't lose so much that I have to start wearing a wig. I'm angry. I feel like I'm in an abusive relationship with my hair. It causes me so much anguish fretting over it, and then it stops falling out and I have all of this hope, only to fall out again. It's hard to accept things and move on when you're constantly back and forth. It's caused a resurgence of my anxiety and I've developed some rather troublesome self esteem issues. I'm smart enough to get help(therapy) for these issues and feelings that have come up but of course I'm still struggling with it. I see so many beautiful people on here who I think look great without their hair, but at the end of the day I'm just not okay with the thought of my hair being gone. My hair makes me feel pretty more than any other feature. My hair envy is out of control as well. My boss has GORGEOUS model hair and I want to throw things at her whenever she complains about her hair(I don't actually throw things). I realize this is turning in to more of a frustration rant than a post, but I just would like to hear from others and how they have learned to deal with the coming and going of your hair. At this point, even if my hair stops shedding and comes back in the missing areas, given the last year my AA will most likely become active again. Some days I want to shave my head so that I can just move on. Anyhow would love to hear from you all :)
Replies to This Discussion
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Permalink Reply by Ivan on
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Katelyn,
I have no answers. But I'm drawn to some people's stories, start writing and see what comes. I looked at your five photos., covered up your hair, and you still look great. So physically at least going bald would not turn you into a monster. You look like a classy lady, with more confidence than most, and I wouldn't be surprised if you looked amazing bald.
Lets skip the obvious reason why most sufferers either delay shaving, or never shave: It's an enormous emotional step.
Next let's honestly look at the condition. Ignoring all of its artificial sub-divisions it takes these forms:
(a) It strikes once, goes away and never returns.
(b) It strikes several times, goes away and never returns.
(c) It strikes once and stays, either remaining constant, going up and down, or gradually getting worse.(d) It repeatedly strikes and returns with no end in sight.
Here's the dilema: Initially at least everyone hopes to either fall into the first two categories. And hopes that one can carry the condition by covering up and that the patches will eventually infill. If this works then original hair length can be cherished and retained. So at first there's a strong argument for not being too drastic.
However, unless the condition quickly resolves itself everyone faces this dilema: 'Hold on, am I in control, or is it controlling me?' The point when a person has had enough and decides to take the condition by the throat has to be different for everyone.
Whether one is male or female makes absolutely no difference, the point being that a person of both sexes eventually reaches breaking point and then hopefully takes control. Taking control can simply involve saying 'I'm going to do nothing for a month and see what transpires.' Anything which takes away the element of uncertainty, trepidation, call it what you will.
Women have their strengths and their weaknesses, just as men do, but their tendency to take longer than men to decide can work against them in this scenario. It can pile on the torment. By all means give yourself time, but put a limit on it which you feel comfortable with. And of course have a ready to implement plan depending on your situation once the 'wait and see' period lapses.
Hope that helps.
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Permalink Reply by Katelyn on
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Thank you for taking the time to write. Your advice is helpful and meaningful. My deciding to forego treatment was a little empowering for me as I was tired of putting in all this effort and keeping my fingers crossed. I can't put that much of my self in to this condition. Thanks again! :)
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Permalink Reply by Rose Marie' on
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Hi
I think Ivan has done a great job with his post. I ditto it.
Hang in there Katelyn, you are doing ok.
Rosy
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Thank you :) hanging in there is something I've been really good at it turns out.
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Permalink Reply by michelle on
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I also agree, Ivan wrote a great post.
Some other thoughts. I do believe your 'hair envy' is part of the grieving process. Hair loss IS a loss and it is reasonable to expect that you will grieve. Take it one day at a time. Can't focus on how much hair you had before and how much hair you may have in the future. Stay in the moment and deal with the state of your hair today. Take back some of the control and you decide how you want to look...whether its a wig, scarf, beanie or bare...its your decision. treatment...when to do it and when to stop is also your decision What ever it is walk with your head held high...continue to move forward with you day....You will have both good and crappy Alopecia days....again one day at a time
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Michelle,
I agree. One thing I've told myself over and over again is that I won't give up. No matter how bad my days are(I was obviously having a bad day when I wrote this), I will not let myself slip in to a hole of self pity and self loathing. Easier said than done but it does help to commiserate from time to time I guess. Thank you for your reply. :)
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Permalink Reply by reesespieces5678 on
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I feel like we are in the same boat exactly...
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It's definitely a very weird stage of this whole experience and one that you kind of have to learn your way through, like with anything in life. So many emotions whirl around this "oddity" that has shown up in my world, and I definitely have a lot of obstacles to over come. If you ever want to chat I'm open! :) Take care.
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Permalink Reply by Bonnie Fimiano on
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God, Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.....
My beautiful son has struggled now with alopecia universalis for almost 2 years. The above is my mantra and his. As a mother we always want to fix things. This is something out of my control. As a family, we all suffer. I have to say though, my son is going to be 12. He is the strongest of us all. One thing that I have learned from him, is that confidence comes from within and shines brightly like a diamond on the outside. He is my inspiration. He chose to shave his head after so many treatments, creams, shots, experimental stuff, etc. He has always said that his friends will like him for him, not his hair. That couldn't be truer. The hardest part is that everyone stares and thinks he has cancer. He has a great sense of humor and that helps enourmously. He has helped us all be stronger and deal with it. You are a beautiful girl. I would start my day saying "I am beautiful and I shine bright like a diamond!" Change the things you can and accept the things you can't! Wishing you only happiness on this journey!
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Permalink Reply by Dena on
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I understand your frustration over the future. That was the hardest part. My daughter had a head full of hair down to her waist in Nov. I was so happy. It was the first time in about a year that she had no spots. I naively thought that we were done dealing with AA. Then it hit her hard. She was completely bald with no eyelashes or eyebrows by the beginning of the year. Between Nov. and Dec., I was crushed. She had a dance recital for Christmas and I have to admit that I was secretly envying all the other girls with their long hair. Not that I didn't love my daughter, I just hated that she was having to deal with this. It wasn't fair. She still doesn't have hair, but is doing well. I am so amazed at her. Where people use to just comment on her pretty long hair, people are now noticing her for her other qualities. I think it is making her a stronger, more caring person. We also have stopped treatment. Someone asked me what I would feel like if her hair grew back. To be honest at this point in our lives I would be scared. She has lost it all and is doing so well. I am scared of her getting her hopes up. Of course I would love for her to grow her hair back and keep it, but I really don't want to deal with the roller coaster of emotions if she was to relapse. I agree with you about the beautiful people on this site. I think looking at the pictures with my daughter has really helped keep her self esteem up. But all of them felt the same way you are feeling now in the beginning. Give it some time. There is a definite grieving period that everyone goes through.
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Permalink Reply by Pat on
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Hi Katelyn, I think the unpredictability of aa is the worse thing to deal with. Up until I lost 90% of my hair I was still living in hope it would grow back. Learning to accept I was one of the small percent of alopecians who go AU was a real grieving process for me. Honestly, without online groups I don't think I would have coped as no-one understood what I was going through emotionally. Whether you regrow your hair or continue to shed spots, do what you can to keep as emotionally healthy as you can. The saying is pray for the best and prepare for the worst. You'll eventually find your best coping strategies, whether it's to get a wig, or shave your head. We all cope a little differently. Btw - I still get hair envy lol
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Permalink Reply by danilee martinez mcbride on
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Remember that God wudnt give u something u could not handle. I know your pain. I have been going through hair loss for 16yrs .
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