I’ve had some type of alopecia for at least 30 years. I have heard so many comments from people. There is one that I just can’t wrap my head around , people telling me how lucky I am to have alopecia and not cancer. It somewhat makes me feel guilty, but why do they think I’m lucky. There are many people that overcome their cancer And live a long, happy, healthy life that includes growing back a full head of hair. I guess it’s the threat of death that they’re referring to. I was just wondering if anybody else ever feels like I do. Please don’t be too harsh. I really don’t mean to be insensitive to those with cancer . Just needed to vent.
I have Alopecia Universalis and have had it for years. I realized I AM the lucky one because I have friends who are fighting for their lives (and losing that battle) and have hair loss associated with it. All I have is hair loss. I have my health. I am not trying to pay off massive massive health care bills while fighting for my life and dealing with hair loss. Yes, some of them get over their cancer but they have the aftereffects of it, bills, worry it will come back etc. I have come to accept having no hair and no longer hide under a wig. I make jokes about it to make other people feel at ease when they see me. *I* am the one that tells THEM that *I* am the lucky one as I don't have cancer. I totally understand your point of view, but I also see the other side of it. I have lost too many friends to cancer
This one makes me crazy. I've had AU for 25 years. No one should compare one disease to another and we should not be made to feel guilty for having a form of baldness that is not connected to a life-threatening condition. We have a right to our feelings because we have lost a body part, think of that. No one would say to an amputee, "well, you have another arm, some people don't have any." Are well-meaning people trying to make us feel better? "You know, that never occurred to me, that some folks are bald because they are getting chemo for cancer and might die." I know that! AU is devastating. I call it the disease that takes your pride but not your life. Thanks for letting me vent!
I have not once thought poor me, it’s a state of mind, this “disease” saves me hours messing about trying to get my hair right every day, my hair is now perfect even day, it sits waiting for me to get up, I’m out the door much earlier, don’t tell people who don’t need to know, it’s none of their business what you have.
Change your mindset to lucky me instead, works for me, you don’t need hair to lead a complete life
I don't think "poor me" either, Poppy. But I also do not minimize my sadness at having AU either. I am glad you are able to be so glib about your hair loss because most of us are not. I have said many many times, hair is NOT cosmetic. It serves a function; it's a protectorate. As a sufferer of AU, I can tell you that no brows/no eyelashes leave your eyes very prone to injury, sweat pouring into them when you are doing something dangerous like driving on an interstate, practically blinding you! No nose hairs, ear hairs mean nothing to filter out germs and virus. Just finished with a urinary tract infection due to no pubic hair. My skin is constantly itching, burning, stinging from no tiny fine hair protecting it. Sorry, but if I "changed my mindset to lucky me", I would be kidding myself, and I refuse to be a phony about my DISEASE so that others can be accommodated.
I find that 90% of people that ask me about my hair loss ask me if I am having cancer treatment, when I say no I have Alopecia they continue to talk about their cancer, a little annoying as I didn’t ask them and they are not interested in my story. I think most people have never heard of alopecia, I hadn’t before I got it. We are lucky in the sense that we are well but it’s a huge confidence changer we have to adjust to for the rest of our life and our families. I had to look deep to accept this new person I see in the mirror. But I have learnt in life loss is something we have no control over.
So true, Tracie. Frankly, I am tired of looking in the mirror and seeing a stranger or, I should say, a blank. I accept the way I look and go about living my life as best I can. But I will never ever pretend that my AU is no big deal. Yes, there are a lot worse things in life, but sometimes things have to stand on their own individual merits. You cannot continue to deflect forever.
Yep, they continue to go on with their cancer story even after I say I don't have cancer. However, today I had a pleasant exchange with a neighbor on my floor. First of all, I've known her for 14 years, so she wasn't a random stranger. I went without hair for several years, now with hair, so she has seen me both ways. Today, she asked, "Do you mind if I ask you something personal?" "Sure." She had a hat on, then said she was looking at hair loss in the future due to chemo. "Your hair looks so great, so what is ..." I knew she was asking what brand of store-bought hair I have. No problem! I told her I like the Paula Young brand and she could easily find the catalog on line or by mail. It was really nice that she began with a sensitive question and a compliment.
My son who has alopecia universalis once told me he's grateful to have alopecia and not cancer. I asked how he would feel if someone were say something like this to him. He said there's plenty if things that trigger him, but this isn't one of them. Seems he's mastering a heart of gratitude. He treats any comments about his hair loss as a positive opportunity to share what alopecia is. Most people are genuinely well intentioned; it's important to keep that in mind.
I think people who make that remark are quite thoughtless, actually. Diseases, whether they be life-threatening (either to quantity of life or quality of life) are NOT a contest and should not be treated as such. Of course, I am grateful that I don't have cancer and would never swap places with someone who does! Do people who do not have AU think those of us who do are so stupid we need to be told "how lucky we are that we don't have cancer"? I often think the remarks made to people with AU are made by people trying to make THEMSELVES feel better, rather make US feel better. I am with you on this one, Laura. Sometimes, people just need to realize that we do not need to hear their opinions, as the only feelings that really matter in regard to our AU are OUR OWN feelings.
I don't believe that I, or anyone else with alopecia is lucky to have alopecia, not cancer. In 2004 I presented with Alopecia Aerata, followed by a diagnosis of Chronic (stage four) Cardiomyopathy in 2005. Cancer can, in some instances, be treated into remission. The only way to recover from Cardiomyopathy is to exchange your permanently damaged heart for a new one.
My view of my situation is two fold, as in a jumbled mess. I grieve when I see my scraggly covered head (avec wig), after which I am immediately reminded that I am at high risk for sudden cardiac arrest if I don't receive a heart transplant first. I do not feel lucky because I have alopecia instead of cancer. My attitude is completely wrapped up in a different deadly disease. Thanks for listening.
I get how you feel. I have had people approach me and cry asking me what kind of cancer I have. I get it and I certainly understand why someone would say it is better than cancer but not having hair is very traumatic and it is very hard to feel lucky, so to speak.
After going hair-free for several years, I decided to put on the store-bought hair again because I got tired of all the attention. It seemed as if I was wearing a sign that read, "Please do come up and comment on my hair-free appearance." But when I get home ... that hair comes off, lol.