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Unnecessary comments from family
I consider myself lucky in that I have a lot of support from my doctors, therapist, friends and family, but I've been having weird (and sort of rude) issues with my parents on and off.
Although no one really knows what is causing my (or anyone else's alopecia areata), my doctors and therapist believe stress is a major component in why I am not healthy in general. My parents know this, and they really do try really hard to be there for me, emotionally and financially. Sometimes though, maybe once every month or two (writing this today because it happened again today), my parents - usually my mom, like today, but sometimes both my parents, will blame me for my alopecia, and make me very stressed and upset.
My mother literally said to me that it's my fault that I lost most of my hair, and it's my fault it hasn't grown back, because of unrelated things ("you aren't responsible about your finances, that's why you're losing hair! you aren't focusing on school, that's why you're losing hair! you're selfish and blah blah blah, that's why you're losing hair!). If that wasn't rough enough, she keeps at it for around 30-60 minutes, and then pretends like she never said anything mean about my hair loss in the first place. Whenever she acts like this, I get so stressed and get really intense physical reactions like the shakes, migraines, inability to eat because I feel so nervous, those kind of things.
I really do thank my mom (and dad, and brother) for everything for the most part, because without their support, I wouldn't have had the insurance to see so many doctors, go to my therapist, or the money to buy my fabulous wig and hats, but her comments (which honestly seem to come out of no where, but seem to be her true feelings about my alopecia) really make me stressed and upset. To make matter kind of worse, I definitely notice more hair loss when she says those things to me, so I know that in some way, stress might be a real factor in my alopecia.
This is mostly just a rant, but would also like to ask you all what you'd do in this situation? I feel like I can't really do anything, because 99% of the time, she is supportive. However, I really don't like these comments from her, about how the alopecia is my fault.
Replies to This Discussion
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Permalink Reply by Jenny Wren on
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I call mine a "Hat".Rene of Paris. I'm very petite & have to have a childs wig. Only wash in cold water & I have a routine of twirling it around on my hands (blow drying) about once a week. They last me about 3/4 mths. Shorter in the winter time with wearing polo neck jumpers + coats as the collars tend to rub on the ends & they become knotted. I dance with mine on - it has only come off once (was mortified) My dancing partner brushed it off during a twirl at the Burton Ball managed to retrive it & put it back on ALL within the beat. He promised not to mention it - Don't think any one else noticed. Have dance with him since.
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Permalink Reply by Tim Irvine on
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Hi Epo,
From my experience, (since age 5) here is what I found:
I never met another person who had it til I was like 24, so in many ways I felt alone and isolated anyway. But the fact is, you can't know, try as you may, what someone else is feeling til you are actually in their shoes. I heard my whole life how "Bald is in now" and "You don't look bad at all bald". I think people often interject to offer help, when just being there is enough. It isn't after all their fault either; and it is not yours. We truly do hurt the ones we love the most and family can be masters of the universe at this.
The arguments of what actually causes Alopecia will be debated for some time, but in the end, it won't matter. You have this, it sucks to have it and nobody can fix it for you. (That is the glass is half empty pity party point of view)
Here is my glass is half full point of view:
You have been given a very unique opportunity and gift. You grow in your gift each day and though it is not of your choosing, it is yours to do with as you may. You can morn the loss of your hair to no end til the cows come home, or you can find yourself anew in it's benefits and embrace it. I know that sounds easier said than done. It took me a long time to fully accept and embrace it as it does many people, but it can be done. You are more than your hair, and once you look past this small part of who you are, you will find yourself to be better for it.
Part of my healing or learning to deal with it came when I worked at muscular dystrophy camp for 2 summers with my job. You tend to forget what you do not have when you look at those who have so much less.
I completely understand the rant, and we are all here to listen to it for you. But please don't hold it against your parents if they say something that rubs you the wrong way. I am sure they are doing their best to cope with it as you are. Remember, parents feel the pain you suffer too.
Take care, Tim
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Permalink Reply by Rose on
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Yeah, mother issues run deep for me too. Tell her how it makes you feel when she says those things to you.....every single time. Don't let her get away with it once and soon your new empowerment will change her habitual ways. Shock her into consciousness by not standing for it anymore. You can do it in a nice way....by simply telling her "when you say this, I feel .....". It may cause tension at first, but it will balance out. and I mean, call her out on everything. If she says you are being too sensitive, tell her to stop belittling you. Wishing you empowerment and healing. GL.
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Your Mom may seem to be mean and cruel but it may be that she is the one who is stressed out and trust me when I say that AU can definitely stress out a mother. A mother usually wants to protect their children from any and everything in the world, when they can't, some deal with it and some shut down. My own mother was very frustrated, scared and stressed out when I first lost my hair at Thirteen years of age. What you need to do is tell straight to her face that she is hurting you (she may not know that she is). Fear usually leads us (especially mothers) to say and do things that they don't mean. If talking to her directly doesn't work them maybe professional help would be needed.
If your mom is the loving, caring person you believe her to be then she would see the mistakes she's made and try to fix it because I know she wouldn't want to lose her child because of insensitive remarks.
Be strong and good luck.
Ria
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Permalink Reply by Pat on
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I believe the trigger for my alopecia was stress as well...however it's just one of many triggers, doctors do not know the exact cause. Also, because people like family/friends latch onto the 'stress' factor it can cause them to blame us who have alopecia because surely if we weren't stressed we wouldn't have it - or so they believe. People everywhere live with all kinds of stress and not everyone goes bald. Also, there's an element of 'what have I done that has contributed to this' in parents minds so there is guilt also which can come out in them making those remarks. No-one is to blame for your alopecia, not you and not your parents. It's an auto-immune condition. It sounds like your mum has never been the most tactful person throughout your life so there's little chance of her changing now but if she starts to make you feel like you're being attacked I would nip it in the bud. You don't have to listen to her 'rant' for 30 minutes, remember you have options. I know we are often super sensitive to comments about our alopecia and it takes time to develop a thick skin and there's always going to be those people who push our buttons, and yes it's usually family. xo
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Permalink Reply by Jessie Malone on
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In high school (1973 ish) my first episode of alopecia areata started, the Dermatologist wrote on a tiny piece of scratch paper with the word "alopecia areata" and told my parents it was from stress . So my brothers and Dad made fun of me. It grew back right away. 10 years later ( a year after I went to Basic training in the Airforce.....and that was extremely stressful ad it didn't fall out then!) all my scalp hair fell out with in a few weeks! Paid 100.00$ for a 3 ounce bottle if specially prepared Minoxidil and my hair all grew back ! 5 years later alopecia universalis started. (1989) and started to grow back when I was pregnant and fell out 6 weeks after I had my daughter. Stress doesn't help but I know stress isn't the main cause. I have been a nurse for 30yrs.. Stressed, but the hardest part can be people you work with and family making hurtful comments ...I don't tell people anymore ... They use it against you . All I can say is stay strong, believe in yourself , it's a hard road to travel but unfortunately it's the path I have to take. I still have meltdowns over this....especially when I have to pay so much money for hair to feel normal ... And getting the hair cut and looking at myself when it's being cut . I have done so much in life even with no hair. I have been in the military twice with this.. Lived in tents for weeks with no place to hide to clean my head:( except in the porta-pots. People ( even people in the medical field) can be so stupid and cruel.... But there is Karma and they will probably go through something terrible also someday.
Stay strong , believe in yourself and live your life to the fullest. Don't let others make your life less fulfilling or ashamed . I am diagnosed with a "mixed connective tissue disease" for the last 10+ years.... I knew it wasn't Just stress causing the hair loss!!!
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