Alopecia World
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Don't hug me
Or rather... Don't hug me unless you're just actually giving a hug for the sake of giving a hug or if you're someone I love.
I love giving hugs and getting hugs. I meet a new friend? They get a hug. I see my family? They get a hug. Even my mom's co-workers got hugs.
But what I don't like are pity hugs. It always seems to shock me what people will say to me when they ask: "Can I give you a hug?"
Stupidly I always fall for it. Because I like hugs. I like the warmth and the good energy I feel when I'm able to make someone smile with one.
But unfortunately it feels uncomfortable now, extremely so when I get asked now and then I hear words relating to my least favorite subject:
The variations on: Do you have cancer?
I blame it on living near one of the best cancer hospitals in IL but gosh darnit people, I do NOT have cancer, stop giving me your pity, I don't like it, I don't like your ignorance, and I don't like feeling bad when I have to tell someone: "No, I'm not a cancer patient."
Feels even worse when I get told I'm beautiful and I'm utterly joyful over it because I've had confidence issues. I've tried to keep my confidence but my looks are the thing I'm LEAST proud of. I love parts of my body, I don't love the whole thing. Being told I'm beautiful never fails to make me feel good... Until well meaning strangers let their foot enter their mouth and follow it up with: "Don't worry even without hair you'll always be beautiful. The treatments'll end soon." Or: "I know chemo is hard but you'll get through it."
Stop it.
Stop it.
STOP IT!!!!
Don't... Take... The things in this world that make me feel good about myself and about life and turn them into something. I don't care what your agenda is, if your asking to come into my personal circle you better state your intentions now.
I don't like it and when I wind up falling for it again as soon as the cancer pity comes out, you can bet your butt I'm moving as fast as humanly possible. One of my friends said I acted like I had just been told by the person they wanted to kill me with a rusty ax.
No.
They said I reminded them of their dead daughter.
I've been dealing with this since I was four. Four years old and I stupidly fall for it every time. Because I want to be a good person, because I want to make people smile but now unless it's a friend or family if I hear those words, I feel the dread.
Yet I still fall for it.
Stop trying to hug me.
I'm sick of getting my confidence burned.
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Comment by Sharalexis on January 8, 2016 at 3:15am
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chile, I live in Detroit Michigan it is cold out here in these streets, u cray...lol I take hugs, high fives, head rubs, blinks....sure beats being called pitbull, ugly bitch, bugger, etc u got me ?
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I know what u mean. But people just don't know what to do and they want to do something. They know they don't understand but the know they need to react. My hair was growing in pretty good for several years and now it's all falling out again. The thing I dread is explaining to the people who I've only know within these past s verbal years what us going on. Everyone feels uncomfortable. And my problem is that I then feel it's my job to make them feel better about my situation. I resort in those conversations to saying it's ok, I've been through this most of my life, hair is weird to me anyways, my inner child is a bald girl. I feel so uncomfortable in those interactions that in order to diffuse them I am not totally honest about how hard this is. But, that may be a blessing, because sometimes if we stew too long inside those negative feelings they do swallow us up. Love to you.
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Comment by Solange De Santis on January 8, 2016 at 9:12am
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Preach it. I hear you. The only reason this happens is because alopecia is relatively rare and there are far more images of bald people who have cancer. Maybe because I'm a middle-aged woman, I get "are you a survivor?" Well, yeah, but not of cancer. I don't get the hug, but I do get the "I'll pray for you." Well, that's nice, but I'm not immediately dying. And of course, "how are the treatments going?" Well, there aren't any.
I've had AU for 18 years and decided to ditch the wig about 15 years ago. However, at this point I'm wearing the store-bought hair again in large social or business occasions where I will meet a lot of new people, or people I won't see again. I'm just sick of constantly explaining!
Hang in there.
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Comment by youarebeautiful on January 8, 2016 at 2:16pm
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I'm on your team. I love hugs, but not fake ones. You can refuse a hug with a no thank you or a hand up if you feel it is a pity hug.
I wish I could meet all of you!!! Is there a conference coming up?
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I will give hugs when I see you because they will be genuine hugs from someone who really cares and knows.
I've had AA since I was a little girl--don't really know the cause. From pictures, I had very fine soft hair, but the person taking care of my hair pulled it too tight. Some caregivers feel that perfectly pulled hair is a sign of their caregiving.
When I see little girls with wild happy hair, I am happy for them.
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Don't really know the cause means I don't know if it is heredity or the way my hair was done as a child. Others in my family have this similar problem, so I really don't know. We went to doctors many times when I was a girl, but I just resorted to wigs. I salute each of you have has managed or "owned" this issue in whatever ways feel most comfortable to you. I love you all. You give me happiness because I see the beauty in each of you beyond the hair. Why am I so philosophical today?
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Comment by Karen Peterik on January 8, 2016 at 3:50pm
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I would love to help you gain a new perspective on this if possible. Perhaps this issue could be looked at as an image conflict - the one that exists between one's private and public life. In private, you sound very well adjusted to living with Alopecia, but in public, where curiosity abounds, you are being challenged by continual assumptions and questions. Another commenter correctly stated that the majority of people associate hair loss with chemotherapy so it is understandable that if a person with Alopecia were to be in public without attempting to use any kind of hair replacement, certain people might want to reach out to offer their support. I think you have to expect that to happen because it is simply human nature. If you are going to "own" the image of living openly with Alopecia, then that entails explaining what it is to the curious and Not having an attitude about doing so. Your response to "the hug" would be one of genuine kindness and understanding of their good intentions.But what if, in the process of retrospection, you identify more with being a person who wants to Not look any different from others and prefer to be judged by criteria other than having hair loss? I am suggesting that you ask yourself if you feel more like You as an "open" Alopecian or a "closed" one. There is no correct answer here, only an honest one. I personally don't see any shame or hypocricy in having Alopecia and wearing a natural-looking wig in public. If this allows you to feel most like you, then won't this decision lead to a happier life? Surely, having a degree of confidence in one's appearance is a plus. I never saw wearing a wig as hiding anything, but rather revealing the person I most closely identify with. I look for opportunities to talk about my Alopecia but only if and when they enter the conversation normally. For me, accepting this incurable auto-immune skin disease is to acknowledge it's existence but to keep it as far in the background of my life as possible.
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I would give you a genuine hug!
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Karen, I respect your opinion, but I disagree. People should mind their own dang business. I doubt that anyone would think it's OK to walk up to a person in a wheelchair and ask how they got there. My hair loss may be quite obvious, but if I don't raise the subject, then just treat me like a normal person and don't bring it up! I'm eternally grateful to people who do this.
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Thanks everyone who responded. This was a bit of a venting piece as I had been having a really crappy day and have been dealing with the awkward questions once more.
I've come to accept my AU but doesn't mean I have to like it. There's pros and cons to it:
Never dealing with head lice was a bonus.
Not having to get hair cuts was an up and a down as one of my cousins is a hair dresser and she would do the haircuts of people in our family for free.... With me in the room. I'd get a little jealous.
I rock a fedora without much effort. And I like being able to put fake tattoo's on my head any time of year if I so wish it. It's a pretty neat blank canvas.
Karen I appreciate your opinion, but I'm not wearing a wig. I'd feel it'd be an insult to myself and every single thing I've fought for, for fourteen years. Been dealing with this since I was four years old. Even been offered a wig but at that point I didn't look like me, or feel like me when I put it on. (Maybe it didn't help that the wig was a blond bob when my original hair was black and long)
Alopecia is part of me but I don't let it control my life... But it doesn't mean I don't have my breaking points.
I'm glad this board exists. It's nice to talk to others who're dealing with it too.
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