How do you deal

Good Morning . I'm so grateful for this site because like all walks of life if you're not the one wearing the shoes , you won't fully understand. I say that to ask how do you all deal with loved ones who fail at having compassion or the slightest sensitivity to your alopecia journey. My mother and my sister have very beautiful hair and although yes it was a little hard growing up you get over it you appreciate them and admire their hair with them because well you love them it'd be wrong to be envious or jealous. However what about when you see how much they admire they're hair to the point it pretty much confirms that to them hair is still a big deal. My sister recently cut her hair off to go natural. I hear her mention how she felt/feels she wouldn't attract any guy since she cut her hair off. She's 20 , I've even seen dialogue between her and her friends jokingly saying bald head this no hair that, not about me but still theyre a reflection of each other. I told my mom that's really shallow of her considering my place. The funny part was my mom said "she's young, that's unfair to her to get mad at her for having something you don't" I understood she didn't understand that wasnt the case . It was my sisters heart in it . It was the fact she sounded like those children from my elementary school when my hair first fell out. So it puzzled me that My sister who was around at that time of it first falling out , now being an adult still make the very same comments and Lets not forget it's my own sister . For some reason my soul , no disrespecting her , could not agree with my mom's logic on the situation. It was like I woke up to some ugly truth that despite my own growth my own sister and mother did not truly accept me. So yes if any of you all have any similar experiences how did you all successfully and positively deal with it. The last thing I want to do is look at my family that way.

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Permalink Reply by Colleen on April 14, 2016 at 7:15pm

I developed AU about 4 years ago, when I was about 28, and it has the hardest journey of my life! It has taken me a lot of time, tears, ups and downs to get to a place of (mostly) acceptance but I completely understand what you are saying! I have some friends that really were insensitive with their words about Alopecia. One friend told me she would kill herself if it happened to her - I mean, is that really even a friend! Luckily I have an amazing longtime boyfriend who always reminds me that the most important thing is how I feel about alopecia and myself. If I feel good about myself - beautiful, strong, worthy - then nothing anyone else says or thinks about me or my alopecia matters because I'm happy with who I am. Honestly, sometimes I even feel bad for people who express terror over the idea of alopecia because their identity is so invested in their looks and I know that I'm strong enough to have this disease and still rock at life! It makes me feel like I'm in on a secret that you can't really understand until you are challenged. It isn't right or sensitive of your sister to make the comments she has been or of your mother to not sympathize with you but if you can just push that aside and try to remember that your strength is a secret super power, I hope it will help you to focus on the most important opinion - your own :)

Permalink Reply by pippinsgirl on April 18, 2016 at 6:17pm

It's ok to assert yourself and explain why it upsets you, that you aren't jealous, but because are hurt by lack of empathy. If they can't recognize you deserve respect and to be treated with love, they aren't worthy of your trust on this issue. 

Example: My mom was upset that I chose not to wear wigs or try any of the "miracle, experimental" (and usually sketchy) products her co-worker's son's wife's cousin with alopecia (or somebody) told her about and still to this day if I go see her and my head is bare, she looks at me with pity, like I'm an injured kitten or something, "oh you poor little thing." I thanked her for trying to help, but I told her I didn't like when she got mad and pitied me for not doing what she wanted because it's my condition/my choice. My grandfather was even worse and tried to emotionally bully me into calling the Hair Club because in his opinion women aren't attractive or acceptable without hair (he has other sexist pig tendencies, so this didn't surprise me). I didn't drop these people from my life, but I set a boundary by declining to talk to them about alopecia anymore.  

Some people, even family, will act like your feelings don't matter, and some will assume they know what is best for you and get butthurt if you have a different opinion. It is a violation of your agency, and you have every right to set boundaries, which can be painful and hard at first, but then it gets easier as you realize their shallowness or condescending attitudes aren't about you, they're about those people's discomfort and inability to accept your alopecia for whatever reason. But you know who you are, and you'll be able to tell when to trust someone because they treat you with dignity and respect.Take care! 

Permalink Reply by Jordan on April 19, 2016 at 8:59am

This is all so true, so exactly how I felt. I just wanted empathy. To have the me response I got from my sister saying what she said just as much I caught the heat for expressing how I was bothered by it. I made sure to let them know that they make it clear they don't accept my condition, and it appeared to sting them a bit, teaching them something about themselves that they weren't aware of. Thank you so much for sharing, because in those moments it's easy to feel alone.

Permalink Reply by youarebeautiful on April 18, 2016 at 9:50pm

I can truly relate when I see others around me with hair.    As little girls we are trained to see beauty based on how our hair looks.  I fall for it/have fallen for it/still fall for it.  We are beautiful with or without our hair.  I wear wigs and notice that I feel better when I get the "right" wig. . . I feel more human.

Give yourself some breathing room when you have "those days" with you mom and sister.  They don't understand.  They can't understand.  Just accept that it's not their journey.

You are very special.  You are very special.  Believe that you are.

You are not less than them and don't let anyone believe that you are less.

Cry if you must but get back up and list all the things that you love about yourself.  We are with you.

Permalink Reply by Jordan on April 19, 2016 at 9:05am

lol same here without that "right wig" I feel something is missing. Of course it's my hair, but Im glad they're are improved options available to us.

Thank you, it means much, especially in those battles of the mind moments. I also checked out that video. It actually answered a question of mine or at least gave me a new perspective, That my family loves me, yet with their inability to understand, they have much to learn and grow from when it comes to this situation.

Permalink Reply by youarebeautiful on April 18, 2016 at 10:02pm
Permalink Reply by youarebeautiful on April 20, 2016 at 7:32pm

I'm sorry with you about your friend having cancer.  I wish her well.

Thanks for coming to the site to bring support.

https://www.youtube.com/watch?v=CN5z9omNpvE

this video shows how to talk with family and friends about alopecia.

Permalink Reply by Jordan on April 21, 2016 at 7:35pm

Yes, I'm very sorry to hear of your friend having cancer, good news is she has you to look up to, to embrace her new look and I pray healing over her.  

I can completely understand what you're saying about human nature and the way you expected those close to you feel. You just put so much in perspective for me and helped me realized, they won't ever understand and if they do, it may take time. Really helps me to gain more control of my life and who I am to me. Growing up my family treated me at a lesser lever, to the point they even expected the worst of me (find any reason to think i'm hurting myself) & although everyday was not easy, they were so far off, it was so challenging.

So I just want to say I appreciate you for sharing your journey with me. Gives me hope and a special place.

Permalink Reply by JessicaStinkle on April 21, 2016 at 8:35pm
I think it's really sad that so many of you have had such bad experiences. I was certainly kicked down a few notches when I lost my hair. I immediately had AU and lost almost everything within a month, eye lashes and brows left when I stopped the medications which was a couple months later. About two weeks into my hairloss the most important man in my life suddenly and unexpectedly passed away. I through the largest pitty party of my life. I made my room dark and cried under the blankets for at least six hours straight. However,I realized something,that is not a life I want to live. So I pulled myself together, ignored the stranger in the mirror for a few weeks, and made myself fake being happy until I finally felt it.

My grandmother said I looked like a little boy, it made me cry, she's old and I'll even say she's senile because that will make me feel better, she didn't mean to be insensitive. Off my shoulder.

I wear an extremely non flattering, boyish, suit for work. On two occasions i had my head down and was mistaken for a "sir"... They saw my face and it was one of those "oh shit" moments. BUTTT they were not malicious terrible people trying to make me upset. Today I keep my head up at all times. ALL TIMES!!

This is not said to belittle any one of your experiences, I can not understand what it feels like to be maliciously insulted or made fun of. I simply can't, therefor, I can not understand how any of you feel. I do however know what it feels like to be stared at. I know that people look at me. I know they assume that I must be dying, crazy for shaving my head, or just as crazy for not wearing a wig. BUTTT,I choose to not let that bother me. It's actually funny because often people tell me that I have so much confidence....that's still something I've been faking.

So how do I deal??
When people stair, ask questions,or make comments, I pull my head up higher, lift my shoulders, and repeat to myself that the world is filled with so many beautiful people, honest, and caring, and also curious, there may be horrible people as well, I simply haven't had to encounter any of them yet.
Permalink Reply by Jordan on April 24, 2016 at 10:37am

great to hear of your experience & how you handled it all, Thank you for sharing

Permalink Reply by Christine on April 22, 2016 at 12:55am
If I'm being totally honest, I've run into this more times than I'd like. I find most people around me are very insensitive to what I have gone through, and what I am going through. And it's not strangers,but family and friends! I've had AA for over ten years now,but only about 4 years since I lost it all. I wear a wig full time now and have no bio hair left on my head. I really don't know if my situation magnifies something that was always going on or not, but I can't believe how much people talk about their hair! At work and out with friends, it seems to always come up, some have even complained about their hair to me, I've responded more than once by stopping looking them dead in the face and saying "really, you want to talk about a bad hair day?" I am often appalled by the complete insensitivity. That being said, they also act like my AA is nothing, no big deal, so I guess I should feel good that I'm really not being defined by it in their eyes. It's hard because I don't feel like I have a safe place to vent. I totally agree with you, your sister is hurting you and that's just not right ever! Empathy,and kindness goes a long way.
Permalink Reply by Jordan on April 24, 2016 at 10:43am

yes it's just a side of people you really don't want to see with this experience, I've had AU since I was 11 so imagine your starting point being an adolescent in school , that's where you are the most, then to come home and realize not much is different there. It molds your life As you said, it feels a bit difficult to vent about everything. The tough part was not much in what she said but how much support went behind how my mother defended her so quickly, as if she was the one with the illness.

Thank you for understanding and sharing, this site and you all's experience helps me to learn that it is something hard for them to understand. Especially since many on here can relate.

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