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How to cope with "helping" family members?
Hello! I've been having alopecia areata since I was around 13, I am now 19 and I think that I had gotten alopecia universalis because I have no hair anywhere on my body anymore. I am starting to accept it, trying to be as open with it as possible but it is really hard. I feel sick every time I have to tell someone, thinking that they will see me different and I blame myself for this (which is really stupid because It wasn't like I used a weird shampoo one day and the hair came out) and I just want to hide when someone know.
Anyways I won't say that I'm not living my life. I go to college and studies, I have a lot of friends and likes to party, So I'm not hiding in my room all day, and half of the time I don't feel like I'm a person with a "sickness" or what the hell to call this.
Anyways, I have a older sister, which I love so much. But she is trying to help me out way too much and it just makes me mad. She drives a taxi in the town we live in and everytime she drives someone with alopecia or with a wig she feels the need to call me afterwards and tell me about it. I guess she wants me to feel like I'm not alone, but I don't feel alone! And I won't feel any less alone of I know that there are another person with alopecia in my town. It's not like we will look eachother up and become wig-buddies just because we both have alopecia. I am a person, not my sickness!
And she is also really wanting me to get my eyebrows tattooed on. I am awsome with an eyebrow pencil, I have watched pretty much every drag-tutorial online to learn how to make a "natural fake eyebrow" and I am really stinking good at it! But she stills wants me get tattooed eyebrows, which I don't judge if anyone have done, but I don't want to. It is not for me. I guess I'm still wanting my own eyebrows to come out, even though I know they wont. I know she wants well, but I just wants her to understand that it is my sickness, and that the worst thing about it (for me anyways) is that everyone thinks first about my sickness and then about me. I get so mad when people think that they know the best thing for me, only because a couple other people with alopecia tried it. And my self esteem is down at the bottom, so I start thinking that she probably hate the way I paint my eyebrows and she wants me to get others, or she hates the way I look when I wake up in the morning, without them. This is me, why do I need to cover it up? Especially for my sister who loves me so much, and who I love so so much in return.
Have anyone else felt the same? How did you cope with it? Should I just tell her or just take it to make her feel like she is doing something nice? I understand that people on our family goes through stuff when we are going through alopecia, but I've had it since I was 13! They should understand that I can live my life pretty good with out natural eyebrows by now? I don't know... Maybe there are any family members to someone with alopecia here who can tell how they are feeling about this? What are you going through? Because a lot of the time I feel selfish who just want to go through it alone, because it is my hair, my body.
Anyways, I would be thankful for responses!
Replies to This Discussion
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Permalink Reply by PaulJ on
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It can be overwhelming when someone tries to help too much (on anything).
Personally I'd just say (diplomatically) to her thanks for your help but I'm doing OK at the moment and just want to get one with life for a while.
Its great that your sister is trying to help though as its tough when you have no one to support you.
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Permalink Reply by Rose Marie' on
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Hi
Your post made me very thoughtful around this as I don't have alopecia my daughter does. My daughter doesn't normally bother with forums etc...and I feel for similar reasons you have stated.
She is getting on with her life...and doing a sterling job of it in my eyes.
It sounds like you are doing really well also. Doing your thing is important and I very much agree that most people don't like to be fully defined by their illness. You are so much more than somebody who has alopecia! (You already know this though)
From my point of view I went through similar things with my daughter...making suggestions etc. She also does not want to tattoo her eyebrows and is NINJA with those eyebrow pencils. My want was always to be open to her needs and your sister sounds as if she loves you very much and may be similar. My suggestion would be to talk to her about this. Say you feel as if you are somehow not doing things right when she continues to make suggestions on how you should present yourself. Tell her that you just want her to appreciate how good you are at doing the stuff you do with your alopecia. Tell her that you don't want alopecia to be your only conversation and you need so much more from her than that. Sometimes people just don't know what to do and by talking to her you may also find our what is driving her to do this.
Hope this helps.
Rosy
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Permalink Reply by BTB (John) on
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My wife has alopecia and I made so many mistakes in dealing with the whole thing in the early days. Too much concern not enough concern, too May suggestions not enough suggestions etc etc. It was inky after coming on here and reading how alopecians felt and coped, where I was able to have an emotinaly detached view of things, it was the that things got better. We were able to talk about it, I was more empathetic than sympathetic and life ash forsook uh better.
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John it's lovely to see you around again. I hope you are feeling well.
Hope we can catch up soon.
Rosy
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Permalink Reply by aggiewife22 on
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My mother-in-law is the same way. She is constantly forwarding me stories about people with Alopecia, or pointing out someone who doesn't have hair, and she even told me she was going to grow her hair out so she could donate it for a wig for me.
I've just had to be honest and tell her that I really appreciate her concern and her sharing stories with me, but I don't want it to be the focus of every conversation. I know my mother-in-law feels like that's the only way she can help me and I bet your sister feels the same way.
I'm sure she'll understand your point of view when you talk to her.
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My daughter has UA as well. The last year she has felt as you do completely. For a year we were a team on research, shots, creams, vitamins.....you get the idea. Then it was the night we shaved her head of final little hairs. I had to be the one she was to focus whatever emotion she needed to. She knows we have an unconditional respect and love. At any point....I think your sister is still in the "team" mode and you are full on live life to its potential and this is me!!! Which is gorgeous and what strength you bare. From that night on- I made a point to transition with her to not obsessing. Not saying that I am not on the outlook for some new cute hat or solution. But I chose wisely when I share it with her. I want to be her support and hear what is going on in all aspects of her world. The impact of Alopecia is still a normal topic. We share and don't dwell on it. I would suggest you approach your sister with love and respect. Although it is not physically happening to her she has gone through it with you. She wants to fix it with an amazing solution that will give peace. Tell her you know how much she cares and talk from the heart. I am sure she will hear you and see YOU. Show her the beauty that you are with and without ninja tactics. Let her see YOU and share with her and tell her you are accepting and doing the best you can and you want her on that same path as you. Alopecia won't ever be taboo but she will see your NINJA moves. Just remember since it is happening to you - you processing acceptance might be faster where she is stuck at fixing. Put your hand out and help to step into your journey. She has been with you and your support - maybe share some of that back. Best of luck! You will both find a comfort zone and LIVE LIFE!
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Permalink Reply by Casey on
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I know how you feel. I dont have people calling me about other people in wigs (I have run into a few AU people in my lifetime so my family knows I know I am not alone). The one annoyance I DO have it people commenting on any hair growth they see on me. I am well aware that any patch that grows in wont stay so having it pointed out to me over and over like it is some sort of miracle gets on my nerves. Eventually I told them WHY it annoyed me and they stopped.
You need to sit with your sister and tell her WHY it hurts your feelings when she makes these comments. Im sure she just wants what is best for you and her heart is in the right place (like with the eyebrows- maybe she thinks you will be more confident).
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