Ok, so I feel a bit rotten saying this, but I'm tired of people telling me "So and so had alopecia and their hair all grew back and never came back again." I know people mean well, but we all know that it doesn't always work out that way.
I've been dealing with this and trying to accept it for the last 2 months. I also had eczema all my life and know that it is a condition that goes in and out of remission. I fully expect the same with the alopecia and I'm fairly sure I will be really shocked and devastated each time it happens. Even if it does grow back, I bet I will never stop checking for spots.
The other thing is wig shopping. Am I really selfish for not wanting anyone to come with me? I just feel like I will be pressured to be ok with it when in fact I know that it will be emotional. I don't want people to tell me not to have feelings about this stupid condition.
I haven't actually said anything to anyone, and I know they are just trying to be supportive. Most days I am ok, but sometimes I just feel angry.
I think my reaction has more to do with being angry about this stupid condition.
Everyone's experience is different with Alopecia...the unpredictability of it is the most difficult part for me. You have every right to feel emotional, angry and any way else that comes up! You have to take care of your self and handle things in the way that makes you comfortable...that can mean wig shopping alone or with a whole entourage:) This is a great platform for getting info and support...the kind you don't get anywhere else. Please feel free to express, express, express. We've all been there and understand.
First off, accept the anger. It, too, will come and go ;D But if you feel comfortable wig shopping alone, by all means, go! The first time I went wig shopping (here's where I get to tell you I've had it come out of remission 3x, each time worse) I went alone, and the women there were awesome. I wore a great dress and my favorite black leather jacket and met one of the consultants who, like me, had alopecia and after several remissions, decided to just rock some wigs forever. I think you have to do for yourself what you need. I've done a lot of things, from getting allergy testing and changing my diet (forever) to reducing stress (permanently). It did return, 3 years later after a few patchy episodes that I was able to cover with haircuts and injections of steroids. But now it's worse than ever (more hair loss.) I do have a new dermo and he's got me on methotrexate (hope and success so far), and I have a new wig (a real hair one). Some people sort of accept this is it and make no other changes, others like me, refuse to be beaten by it and have changed everything and are willing to try (almost) anything. Let your anger be pushed in another direction - exercise, research, fighting back against the disease. There are HUGE feelings with this disease - grief, loss, anger, frustration, and maybe, eventually acceptance (not for me!) There are even deeper things - I happen to be married, but I would be lying if I said it didn't affect our relationship. Having hair in between my latest flares showed me that for sure. So be angry, but get that anger channeled somewhere if you can, hopefully directed at this stupid disease!
oh my god NO you are not selfish. going wig shopping for the first time is not an experience you want to share with someone else. unless you're one of those people who hate doing anything alone, blah blah. but No, seriously, i remember i went with my mom when i was 18 when my hair had started falling out and even though she was my mom I felt self conscious and embarrassed. You have to do what makes you comfortable.
I also suffer from eczema and alopecia. Go figure. I think they go hand in hand sometimes. I believe one must be related to the other. I also find it the most frustrating, infuriating thing. No one can pin point what it is exactly that is causing it. Ive also had my hair start growing back a few times, only to completely fall out again. Same with eczema. Some days its absolutely awful, and other days like today its completely cleared up. Why, why!? It doesn't make sense. I have seen doctors, nutritionlists, herbalists...everyone has something different to say. But no one can find the root of it. It is one of those unexplainable things in my life. The frustrating thing is that maybe there is a solution, maybe if I stop eating wheat and sugar and caffeine all together it will clear up my skin and my hair will grow back. But i can't seem to find what it is IS! I wish you could just take a simple test that would tell you - Bam! its stress! or Bam! Its an Iron deficiency! But its not like that..they can only give you many reasons why it might be happening..Anyways i'm getting off track. Im just trying to say that I know how you feel, and false hope isnt very helfpul in this sort of situation.
I think part of the reason I stopped actively trying to find a way to make it grow back, is becasue its almost more stressful and depressing trying all these different medications and regimens and never really knowing if it will truly work or if it will even last.
I thought that my alopecia would have at least stayed to my head, but my eyelashes and eyebrows have started to fall out now too. :( it fucking sucks. it is something that other peopel will never understand. Even though i wear a nice human hair wig and most people cant even tell, when you start losing your eyebrows and eyelashes it makes you look strange and its alot more noticeable. ughghgh...its hard. never try to make yourself think that its not hard, or that you shouldn't be upset by it. All you can do is find a really nice wig that makes you feel good, (or head scarves or whatever works for you) and try to live healthily, do things you love, and only surround yourself with people who don't care if you have hair or not. Thats the only way to not let it ruin your life. becuase believe me I can still get so depressed about it somedays. You can't help it.
I hope some of this helped...sorry if it just sounded like a rant. haha.
much love to you
I like what you wrote. I am the mom. The one that will go and buy a first wig. I suffer ... but it is -of course- a different kind of suffering than my daughter experiences... It helps me to understand her when I read your post. The frustration is enormous. And I think what you said about the finding out about what is the thing that she could avoid to eat, to drink, to do... that would be so great and it does not even sound so complicated to e able to find out, to invent that simple test! All that senseless suffering! She had thick beautiful long hair last summer. And now it is all gone... I feel so helpless. Well, thanks for sharing your feelings. Stay honest and strong and vulnerable. Best wishes, Magdalene.
You have a right to your feelings. All of us with alopecia do. I have had AU for 18 years. No hair has ever come back, except for a stray one here and there. This is a body part we have lost, not "just hair."
In terms of wig shopping, a girlfriend wants to go with me and she thinks it will be fun. Frankly, I would rather go alone, also. I'm not a Debbie Downer, but the last thing I believe it will be is fun. Just let me have some privacy with the wig professional.
Hang in there, Rose, and if well-meaning people say the wrong thing, just smile and change the subject.
I've serviced clients with Alopecia for 20 years. Everyone has their own way of coping. These forums are great for getting support from others who are experiencing what you're going through. The average person has very little experience with Alopecia and really wouldn't know what to say to someone like you. Eventually, you will come to that place where you will become more accepting of your condition. It will be the least of your worries and you would care less of what others think or say because you will realize that there is more substance to the person behind your appearance. You are not your hair.
I always can appreciate consulting with a client who comes in with their best friend, husband, sister, or mother. You never want to just take the advice of the sales person. Besides, your family and friends know your style much better than the wig retailer.
I wish you the best in your journey.
OMG!!!!!! You're Beautiful! Hopefully some day your hair will be the least of your concerns. I wish you the best in your journey.
I agree - the "Maybe it's stress" comment is the toughest one to hear.