Alopecia World
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New to alopecia
Hi,
I have recently been diagnosed with alopecia areata. Both my doctor and many of the sites I read on-line seem to suggest that it's not unusual to get a patch, to have your hair grow back, and then to be done with it, but I feel like everything I read on this site suggests otherwise. It seems like everyone starts with a small patch and eventually lose massive amounts of hair. It's been two weeks since I've seen my doctor, and already I think a new patch is developing. I am obsessing about this now, and what I would really like to know is that this is a phase and I will get to a place where I can think of other things, and remember this is hair loss, and is not life threatening. Can anyone talk about how they go through their days now and spend little time thinking about their hair? Right now I don't even like to shower, comb my hair or anything, because it's a constant reminder of the hair I am losing. It doesn't seem healthy to be obsessing this way, and reading the stories on this site haven't helped me--
Replies to This Discussion
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Permalink Reply by Fay on
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Liza,
I can really relate. I just had all my hair cut off this morning after having hair that looks to be thinning just 3 weeks ago. I went bald because I had more scalp than hair. It is hard to live with. Most days and nights I wear a scarf. Every time I look at myself I cry and need to glance away. One day at time.
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Hi Fay,
It's funny, because the two hardest times of the day for me are morning and night- in between I can just avoid mirrors, and try not to think about it. Shaving your head is brave, and from other posts I've read, I can see how shaving one's head beats watching your hair fall out. I've never seen so many pictures of women with no hair until I visited this site, and I have to say it has been encouraging, as these women look healthy and vibrant.
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Hi Liz
What you are doing is very normal and acceptable. I realise it is also very stressful and frightening. I understand that you aren't terribly ill etc., but that doesn't change the fact that you are dealing with what may be a life altering event and that takes time to work through, so don't be hard on yourself. Give yourself time to understand what this is to you at this time and what this may mean in the future. (obsessing is you trying to work out what to do).
Nobody can tell you what is going to happen with your hairloss. I have been helping people for many years and from my experience no two people have the same prognosis, shedding pattern etc. etc. This condition is as individual as the person dealing with it. That is the worst to deal with and work through. The lack of control is very difficult to manage, but you will find your way.
I think the best course of action is to be educated about possibilities and what you may like to do if things become more extreme. Then start to live in the now. If you have a patch now and it is not noticeable - do your best to get on with life. If it gets to the point where you are feeling uncomfortable with the amount of hairloss you have, become proactive around how you may like to handle that. Whether that be scarfs, hats, wigs, or nothing at all. As long as you work out what makes you feel the most comfortable you will start to feel a little better.
If I can help in any way feel free to pop into my page.
Rosy
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Thanks very much Rosy. I feel like it's a catch 22, though, if stress has anything to do with it, since I'm definitely having a lot of stress now, thinking about this!
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Hi Liz
I personally don't believe stress is the reason for alopecia. If that was the case 100% of the world's population would have alopecia because everybody no matter what their lifestyle etc. has stress.
There is no Catch 22 with hairloss and stress. Hairloss is something you can't control... that is the worst thing to try and understand and manage...you have no control over what is happening to you, and that is frightening, frustrating and for most totally unacceptable.
Hang in there you will find your way.
Rosy
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Hi Liz. Welcome to the site. I joined the site about a week or two after I noticed my hair was falling out. I remember for me the first 3 months were very traumatic and scary, and I too obsessed about the patches so I know what it's like.
With AA it's not possible to know what route it will take. For some it all falls out, for some it regrows very quickly. The reason there are so many different outcomes is that there are so many differnt hair loss causes. If you can find the trigger and fix it, then it will have more chance of recovering quickly. For me, once the trigger was stress. It was a struggle to fix that one, but once I did it regrow. Second time it was a bad reaction to an anesthetic I was given in hospital. So once it was out my system the hair mostly stopped falling out.
Do you know what has triggered your hair loss? If you give us a bit more info perhaps people that have had the same issue can offer specific solutions?
As for coping strategies, if you are worried about the appearance of your hair I'd recommend going to a good wig shop (in person not online) as my wig shop in Edinburgh are absolutely fantastic - they offer loads of solutions such as hair extensions, weaves, cover-up make up for the scalp, hair pieces, clip on pony tails as well as wigs. They also have experienced hair dressers that are used to doing special hair cuts to cover up patches, but that still look good. Perhaps there is a similar shop near you. What area are you in?
I know it's hard to get through the day when everything is a reminder of your hair loss, and everytime you touch your hair some of it comes out. I used to look in the mirror only once (in the morning, before leaving the house) I'd look at myself, acknowledge the problem, allow myself a few minutes of feeling down about it, and then move the f**k on with the rest of my day. I'd not let myself think about it, obsess, touch my hair or stare in the mirror until the next again morning. For me it helped.
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Hi Liz
Welcome :-) I have AA and I have only been on Alopecia World for a short time, like everyone else on here has disucssed, AA is different for everyone. It took me a while to accept what was happening to me and I was stressing heaps. My stomach was in knots, there have been tears. A few things I have learned from this, if you can share what you are going through with your friends/family. I didn't do this to begin with and I feel it didn't help my situation. (Only my close family and friends know) Once I told my dearest friends, it felt like a weight have lifted. Also what has worked for me is to try and work on myself to keep me calm, eg listening to mediation music, having massages, kinesiology, naturopath. No one can tell you what you should do, you can be informed and make decisions that are right for you.
I felt the same when I was reading the stories on here, but I believe that those that have had success with hair growth won't be sharing their success on AW frequently, as those who are needing support for what they are going through eg (like me) :-) I hope I have been of some help to you.
cheers
Blue tulip
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