Alopecia World
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Different groups, different views, different ways of coping
This post ain't to upset anyone in particular. But I find that people have different ways of coping and how they look at their alopecia. And I also find some groups outside of aw spread different messages to their fellow members. These messages are from alopecia is not normal and should be cured to you are beautiful bald . And I want to highlight since alopecia is different for everyone.How they cope is different too. And sometimes you find sometimes different people's way of coping is different from you. Don't let that affect your progress in coping and make you upset that you can't cope well. My message to every alopecian out there.. I don't really care if you have hair or no hair. I find you all beautiful and handsome and in your own right. And the only thing I want for everyone is that you are happy and you are doing it your way. From cures to finding options. As long as you are happy with it. You shouldn't care for what other people say about it.. And if you are not happy with alopecia. Don't give up because there will always be a light at the end of the tunnel. That is my message to all alopecians out there. Now what would you add to this post to make everyone coping feel better about themselves and warm inside?
Replies to This Discussion
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Permalink Reply by Tallgirl on
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I'd say that the "light at the end of the tunnel" may NOT be hair growth, but a change in personal drive (assertiveness, not depression or aggression), and a taking on of other therapies, hobbies, closer relationships, major moves, or new fashion choices. Maybe it is developing a sense of humor or compassion, or helping with research or advocacy. Those are also "lights."
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Permalink Reply by Lori Van Decker on
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I wish there were a "like" button. I would definitely click it for Tallgirl's post. :)
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Permalink Reply by Bald and Fabulous AKA Terri on
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LIKE LIKE !!!
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Permalink Reply by cindy Babs on
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Tan. U r awesome. Keep your keen insight coming. I need it.
Robb. U r hilarious. So funny.
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Permalink Reply by Michele Mae Godlewski on
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Without going into great length about my daughter's history regarding Alopecia, as a parent, I have learned that coping is a very personal path. I have always tried to be supportive of my daughter's ways of coping...when she considered having her head tattooed, I volunteered to shave my head and do the same. Fortunately, I think for both of us, it never came to that! Looking back, it appears to me, that the times she chose to wear a hat, or a bandana, always seemed to be for everyone else's benefit than her own. She experimented with wigs, but found them uncomfortable. She has been the epitome of confidence on the outside, but there are always people who are unfamiliar with alopecia who get the impression that she is trying to gain attention, or that she is faking an illness, then on the other hand she has at times been made to feel that if others wear a wig, she must think they are weak, or more worried about the opinions of others...so the battle continues on the inside, daily. It is a completely personal choice, and I know that my daughter fully agrees as well. Should she wear a wig, and be uncomfortable so that others won't be? Should others go naturally bald, uncomfortably so, for any reason? My daughter and the family have completely accepted the fact that her hair is gone and is not likely to return. Those looking for a cure, I honestly believe, should dwell more on finding that same acceptance. Our experience has been that there are plenty of doctors from every field that would be happy to provide you with some false hope, along with some very expensive and possibly painful treatments. We have strived to inform and educate others about Alopecia. Obviously we need to keep trying, because again, people assume from what they see on the outside without considering a person's history or what they might be going through on the inside. We will soon be holding our 3rd annual event to raise funds for the NAAF for continued research, support, and education...and of course another goal is to raise awareness. To each person who may read this that is struggling with Alopecia, what I want to say most importantly of all, is that you are NOT alone!
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Hi
Nice post Tan B ...I totally agree. :)
Rosy
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My daughter is 4 years old and completely bald. She doesn't like hats, scarves or any other head covering and I will not make her feel like she has to wear anything to cover herself (other than sunscreen). So far she has a great attitude about it. When someone asks she tells them "It's just my alopecia". That being said - I don't know what the future will hold and how cruel other children can be. We strive to be as strong as we can be as parents for her and teach her that confidence is key - don't let others bother you. We will see what the future brings. A cure is always a wonderful dream but as for now we will stick with confidence.
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You guys need to put way more time into helping find a cure for your sickness, than trying to rewire your human nature, and pretending that you are so enlightened, especially you Tanya. Hate to rain on the parade, but its quite alright to have personal preferences about how other people look or how we, ourselves look. I sometimes wonder if you really buy into your own 'everyone-is-beautiful' talk. Quite frankly, i find some people more appealing than others, with or without hair - sometimes due to their personality, sometimes due to their appearance. I also like chocolate ice cream more than i like vanilla; and i prefer green over pink; or Renoir over Picasso; some clothes more than others. Is that ok? Or does that make me superficial. And hey, check this out...i always liked the way i looked more with hair than without...how dark ages of me, huh? You know, even after 20 years with AU, i just couldn't sell myself the lie that hair didn't make a difference....although it may be different for those who have no recollection of ever having hair...although even that i doubt (wigs, fake brows/lashes). Especially since its a disease people!! I have some advice Tallgirl and Lori: instead of throwing in the towel for you and everyone else, how bout you get motivated by something that touches your life everyday and get busy pushing for research, treatments, and a cure!. Surely, all you people that run in the other direction must realize what that says to all the sufferers behind you. If you are honest with yourself, the truth is that you have all chosen your form of coping because you gave up and felt there are no options...not because its the right way. Its because you decided it was your only way. Its just that simple. Not for one second would any newly diagnosed alopecian turn away a shot in the arm to cure it, if such a thing were available...and that probably goes for everyone that will ever visit this page.
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I don't know about the others, but I teach (currently laid off, so I tend to be on here more than usual this summer...still "teaching" in a way), have an M.A. in Art Education, am on my second special education credential program at a college (my 11th college!), and am a nerdy older (Shut up, Norm!) white lady. Of course, being laid off and so broke I have to save my gas for interviews and get my food at Salvation Army (still paying off debts left by a family member)...my only way to help the cause is to do it without money, phone calls or travel; i.e., here. I have already gotten to the point where my genetically-caused condition probably won't reverse in my lifetime, and luckily have already had the opportunity to travel, marry, have kids and become a grandma, enter art shows, work at some dream jobs...but also to have a husband leave for a long-haired secretary when I "wouldn't" grow hair for him (he was stupid enough to ORDER me to grow hair, knowing full well about alopecia from personally attending a support group event with me and the kids). Membership fees for NAAF go to research, but I can't afford those extras right now. As you will see, I put every latest thing I find on research in a blog on this site.
Diseases are catchy. No one can catch my genetic alopecia, so I call mine a CONDITION. Yes, I do remember hair: had it for half of my life. I choose wigs, but just this year braved a shaved noggin in public while on vacation. I will still wear a wig in most situations, however. Just recently, I located a little alopecian girl who I wrote to (and to her mother) when she was 5: she is now 25, married, with children. I plan to continue writing, because that correspondence actually got ME through a tough Thanksgiving years ago. (Ever have a bald five-year old make a cassette tape for you, telling YOU to cheer up about hair loss? TOTALLY touching!).
So, AU-NO-MORE, why are YOU on a SOCIAL alopecia support site, rather than on a research panel at NAAF?
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Honestly, the reason im here is 1) because i know tanya; and 2) cause i like to hear the 'crazy' brainwashing that people with alopecia self-administer. I had AU for 19 years, so im quite familiar with all of it. When i regrew my hair i decided enough was enough of watching nothing being done for alopecia and seeing the alopecia community build higher and higher walls around their fantasy land. I keep trying to tell people with alopecia that if they keep telling everyone how happy and well-adjusted they are with alopecia, how its the best thing that ever happened to them, why will anyone outside the alopecia community want to help fund research toward anything. Oh, and btw, i feel for your deal with the husband. I want to let you that i know the feeling.
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I don't think that anyone who can regain their confidence and self-esteem dealing with Alopecia has in any way thrown in the towel, I don't believe they are running in another direction, I certainly don't think they have been brain-washed, and I never meant to give the impression that by finding acceptance anyone should give up on finding a cure. The funds we raise at the event we hold annually all goes to NAAF toward that ulitmate goal. My daughter's battle at the time of her diagnosis was a series of treatments that brought no results. It was heartbreaking to witness each attempt, every let down. I am so happy for her that she could finally be comfortable with the fact that she does not have hair. I am so very proud of her for all that she does to support others, regardless if they opt to cover their heads, paint on eyebrows, or walk boldly the way they are. I know it has been a wonderful source of support for her to have met so many others with Alopecia that share her positive attitude. She has formed a few very close friendships, and together they have been a huge advocate for NAAF. By sharing their experiences with others struggling with this disease, they are tearing down walls rather than building them higher and higher. It may seem that research for a cure gets put on the back burner...life threatening illnesses will probably always have priority, but I think that it is wonderful that there are support groups and sites like AW for those that are having difficulty coping, and I hope no one has to go 20 years unable to find a way.
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