Alopecia World
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Tired of everyone telling me it will all grow back
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.
Replies to This Discussion
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Permalink Reply by atypical60 on
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Personally, I think it's ok to be angry. You aren't alone! There are times when I become both agitated and angry because my once beautiful, thick and lustrous head of hair is mostly gone in the back of my crown and increasing to the top of my head. People i.e. FAMILY continue to tell me that I'm basically crazy because everyone loses hair. I stopped listening to others (caveat. One of my sons is supportive). Wig shopping for me, is done online. I've found that two online wig companies work well for me: Vogue wigs and Wigs.com. Brick & Mortar wig shops are way too expensive and offer the same items that the online companies offer. I will say, beware though, of ANY online wig store that advertises photos of celebrities. They are a scam. Celebrities ENDORSING wig companies are a bit different. Viveca Fox has a wonderful line of affordable wigs. Raquel Welch does too but I"ve never purchased any of hers. And you are one hundred percent correct to go by yourself for the wigs. It's a personal and emotional purchase. You don't need the input of anyone else. Best of luck.
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Permalink Reply by dorothy on
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well, I have had AT for almost 54 yrs. as long as I know I can go to where I have been going for my wigs I am good. I have had the same place for about 30 yrs. I do have eye lashes , which I suppose is weird. but if I lost those , don't know how I would feel about that. school sucked, having it fall out and come in 10 times sucked, but there are far worse things to have. nobody ever died from this. that's my thoughts anyway. you just have to deal with each day as it comes. you have to.
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Dorothy, you hit the nail right on the head. I wanted to say exactly what you just did in a short paragraph but because I'm not a sufferer, my comment would have most likely been overlooked. My clients have your attitude and confidence. "Life goes on and it can be a lot worse considering it's not a life or death situation."
Please continue supporting these women and young girls so that some day they can have your strength to move forward. Cheers to you!
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Permalink Reply by CBrown on
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I'm sorry, Rose. This is one area where we as a collective community can relate to, and those that don't have it simply can't. I also resent people who suddenly become experts on my conditions. First and foremost, it's your body. You do whatever the hell you want to, whether it means bringing someone with you to pick out hair, or to do it on your own. You're not going to pick out a prom dress, for Pete's sake. You're also (I'm assuming) not going around and asking everyone's opinion on the cut/color/style of hairpieces you should buy. It's not "selfish" by any means. I blame that type of thinking on the whole pink ribbon phenomenon where everyone is of the mindset that awareness about a condition also means that everyone should have their butts all up in your business. You may have to use small words, but be firm. "No, there is no evidence that hair grows back and resumes normal growth with this disease." And "No, picking out wigs is a very personal decision to me, and I'd like to decide on my own." Always start with a firm "No," then pause, then give them your reasons in small words at a slow pace. :-) Also, it's okay for you to be upset that they are not honoring your decisions and to let them know that their behavior is not welcomed. BTW, my history is that I got alopecia areata starting at age 5; at age 23 it changed to alopecia totalis, and at age 28 it morphed into alopecia universalis. I'm 41 now.
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Be pissed off. I'm so sick of the mindset of: "Gotta be a good little advocate" bullcrap it drives me nuts now. I can't stand it. I have patience for people I actually give a crap about. Strangers?
It always feels like it comes out of left field. Left standing there wanting to leave a store while a stranger has decided to chat up my mom about their experiences with hair loss for a half an hour when it's nothing that I have intention of doing any time soon. (One person said theirs disappeared after they went through labor. I was sixteen. I was not going to get knocked up for the sake of hair I get they mean well but goodness goddess listen to what we're saying!) It gets frustrating or awkward because THEN I feel bad.
Like sorry I don't have a disease that kills 90% of kids who get it. Sorry I'm NOT dying of the same disease your kid died of but you need to back away cause now your creepin' me out. (I had a lady stalk me around because after my hair fell out I apparently looked just like her dead kid who just died of leukemia. I was five. Who the heck stalks a five year old because they look like your dead daughter?)
It's okay to be pissed because the anger eventually passes.
It's okay to be mad. I finally had it after fourteen years of it. I have my confidence but I have my dignity too. We all have a right to it.
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Permalink Reply by Lady J.Hall on
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Rose, Darling.....taken from an old R&B song. IT's YOUR PREROGATIVE!
Prerogative goes back to a Latin root for a group having the right to vote first and thus came to mean "privileged rank." In current use, it refers to a right or privilege held by any person or group. A near synonym is privilege, which puts more emphasis on the fact that others do not have it. The self-justifying phrase "That's my prerogative" (for example, in reference to changing one's mind) is quite common
Trust me, we have a privilege to do and feel whatever we like. People that don't suffer from this disease cannot and do not have the right to try to tell us how to feel or judge us for feeling the way we do because they're not walking in our shoes. If you want to change your mind and wear a wig one day and the next day NOT wear one, then it's up to you. Our feelings about this disease may change on a daily basis. Some days, I'm good and some days, I'm not so good. But those are MY feelings. Not my husbands, not my parents, children's or friends. Those that say "oh, it will grow back...don't know what they are talking about" as everyone's Alopecia is different. I have so many people still telling me to try this, have you tried that?!?! I tell them, "Look, if getting 15-20 steroid injections in the top of my head every month for 7 months didn't work, I'm done, and you should be done telling me what to do". Now, it may seem a little harsh, to say this to some people, but those know-it-alls need to know that I've done my research and I may know a little more about my disease than they do. Not trying to hurt their feelings, but they don't realize that what they say, could potentially hurt our feelings.
As far as the wig shopping, I have been on both sides of the coin. I have had people that wanted me to go with them to purchase a wig and I have often wanted to be alone when I was wig shopping so I could handle it my own way. Again, it's your prerogative to change your mind about that as well from day to day.
For 5-6 years I wore wigs and weaves consistently! I went completely bald and shaved off the remaining hair last year in July. Right now I'm rocking a weave just in the top and wearing my own hair in the back because it still grows really fast and my head was getting cold. (LOL) Who knows how I will feel next month when the weather changes. Don't feel bad, negative, or indifferent about the emotions you may carry resulting from this condition. We are women....emotional creatures...how dare anyone tell us not to have feelings about anything. DUH! Embrace all of it....and DO YOU!!!!
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I got AA when I was in middle school. It was small patches at first, and my mom would use hairspray to cover them, but by high school, it pretty much all fell out. I got a wig junior year, have worn one since. My parents went with me obviously the first time: got an off-the-shelf wig that was then cut. Later on, I got others, always went alone. I actually went to places a few towns away so no one would recognize me in the shop... Since I've been married, wife has gone with me. I got one really nice one in NYC but I'm about 90 minutes from the city, and going there was always a production, it'd take a whole day and my wife would be saddled with the kids. Last one I got locally, and my wife came with for a little while, and she actually found the place. I couldn't imagine buying a wig with anyone except your spouse (or your parents if you are a minor, particularly if they are paying for it).
The condition does suck, though. I mean, I know it's not as bad as many other conditions, but it still sucks to have it in high school or college or your 20s while dating. At this point in my life at age 45, with a wife and two kids, not such a big deal anymore. I just hope and pray neither of my kids ever gets this (so far so good at ages 8 and 11).
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Wow. Thank you all for your wonderful responses. You've helped me more in a matter of a couple of hours than I can explain. I'm 47 years old and married and don't have kids. My husband has low vision and so he totally gets it.
I'm the youngest of 5 siblings and I can tell that my sisters are desperate to protect me. They don't want me to hurt.
Thank you all so much again. I'm so glad I found this forum.
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Permalink Reply by Dorothy on
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You have a right to your feelings. That is it. If you want to be alone, then be alone. You do not have to make excuses, just tell they you appreciate the offer but this is an alone moment. IF you need them in the future you will let them know. You can be angry you can feel how you feel, they are your feelings. As far as people telling you that your hair will regrow, simply tell them thank you for the good thoughts, but you do know enough people who never had regrowth and while you are trying to keep a positive note you have to maintain an honest outlook too. Perhaps that will keep them at bay. Me, I never had regrowth and I am coming close to 43 years of AU. So, while others have had regrowth (my parents knew of such a man), I never did and after all these years, I guess if I have to be this way, I would rather not have the roller coaster ride.
Good Luck and prayers to you.
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Permalink Reply by Jordan on
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Hi Rose . I think one of the hardest thing about this condition is co existing and handling your emotions . I've had alopecia since I was 11. I'm 25 now and no lie I've just begun to say f it (excuse my words) and do what makes me happy. Doctors told me it might not grow back strangers told me they knew people whose hair did. Well I'm still bald but I love hair so I love wigs. I've prepared myself with the fact that some days I am going to cry I am going to get angry then I'll go reward myself with a nice outfit a new hairstyle or simply just a good movie. It's a devastating process in which you have to find what's best for you , take the time you need to come to grips YET you also have to tell yourself if it doesn't grow back will it or I be ok? Either way you're human, no one is in your shoes so feel what you need it will only hurt you to not express your feelings. hope this in some way helps . Live ! ;)
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Hi Rose. I totally understand where you are coming from. When it's really hot in the Summer and just wear my bandana everyone asks me how my chemotherapy is going because they assume I have cancer. I have Alopecia Universalis; I am totally bald and have had to deal with this for 8 years. It's never easy but I had to accept it. Wigs are expensive and they are hot and uncomfortable. All I know is you can only FOCUS on what you can CONTROL.......the rest you just have to accept. I get mad if someone tells me "Oh, it's just hair." THAT one really makes me mad! All I can say is unfortunately we cannot control what other people say so just try to make the best of it and think positive that at least you are healthy with no hair and NOT losing your hair because of having cancer.
Best wishes!
Robin
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