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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 Pam on
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I find it really sad that any parent would say such things to their child - AA is a terrible condition and anyone who suffers from it needs a supportive environment. I think I would sit them down and let them know that their harsh words really hurt, and that you would appreciate it if they could stop. Don't be afraid to tell them exactly how you feel. Maybe they don't realize how much it impacts you. Let them know that you really need their support right now. Best of luck to you!
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Everyone, minus my mother, knows just how much it impacts me. And sometimes someone does make an insensitive, off, or embarrassing (for me) remark like "your wig is lopsided" but they always say sorry after, once I tell them why it hurts my feelings. Everyone else really make a point of learning from our conversations, if there was a weird comment said.
My mother, on the other hand, has always been like this, since pre AA, so her comments about my AA, while really hurtful and mean, are also a constant since I was in single digits! It's really annoying, and as I'm 25 years old now, I've learned to ignore her most of the time, since she always seems to forget me telling her why her comments about x, y or z are really terrible and repeats her mean comments. However, given that this AA is something that's never happened to me before, and I'm still not dealing with it well, her comments are just that much more sharp and painful rather than annoying and stupid.
Thanks for your reply!
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What's pretty hilarious is that pre-AA, I saw my therapist for years due to having mother issues! She has always been some shade of "ugh" but like in my comment above, pre-AA, I was able to ignore her for the most part. My issues with the way she says terrible things really randomly stem from child hood, but the AA sort of broke down the defenses I built against my mother (who, for the record, is awesome 90-95% of the time, but boy, the 5-10% of the time when she is a total grouch really makes it hard to deal with her).
She will remember out conversations where I tell her exactly why x, y or z are terrible things to say, but come a month or two later, she forgets and starts it up all over again!
I think I will have to start ignoring her again when she does say such dumb things, and try to block her out, since I really don't think she will get it any time soon since she hasn't gotten it in the last 15-20 years! It's just that normally, I'd laugh off her nonsense, since I had gotten to a point where what she has to say when she would be mean would be deflected away, but AA has made that really hard since I'm so self-concious, and just have bouts of negative feelings.
Thanks for your reply, Aimee! :-)
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Permalink Reply by Lilac on
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I understand what you are going through right now. I too get unnecessary comments from my family that not eating healthy is the main cause of my androgenetic alopecia, but to the hell with it, nobody, including myself, knows why I got it. When I face this barrage of comments, I just ignore them and remind myself that nobody will truly understand the position that we are in. It sucks but it's what helps me deal with it.
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I am going to have to get back on the ignoring the comments train again, its just been so hard to do with AA, since I feel really sensitive and self-conscious. I feel like I'm still at that part of AA mentality where I still feel like my confidence is attached to my hair, and since it's still falling out, and not entirely growing back, I just feel weak. I hope to get out of that soon, but it's certainly a task to feel confident again.
Thanks for your reply!!
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Hi
I disagree with the diagnosis that alopecia or any auto immune condition is caused by stress. Stress may exacerbate the situation you are in, but I don't believe it is the cause of your alopecia.
I have always felt when people ask me if my daughter is stressed (and is that why she has alopecia), it is somehow blaming her for her condition .....because supposedly we are able to control the stress we have in our lifes. This to me is so very wrong. Stress comes into everybodies life, you would not be alive if you didn't have to deal with stress. It is natural and something we all do....but obviously not everyone looses their hair or has auto immune diseases, such as alopecia.
I hate the thought of people blaming you for your illness, because the reality is you haven't done anything to cause your alopecia....nobody knows what causes it and nobody knows the full ramifications of stress in people's lives. But the bottom line for stress is that we all have it.
When my daughter lost her hair she was 12....her doctor asked her are you stressed, she turned to me and asked "What is stress, mom?"...I turned to the doctor and said well, she wasn't stressed before she started to loose her hair, but I would suggest she is fairly upset now. In the car on the way home (after that appointment and questioning), even at that young age, my daughter asked me if she had made her hair fall out....I absolutely assured her that she had most definately not contributed to her auto immune disease and her hairloss. I was boiling mad inside that a doctor could suggest this to such a young child....but when they don't know the answers the 'stress card' is often pulled out and it has some horrible ramifications for the person trying to deal with an illness
The other thing that happens when stress is used as a causation factor....it suggests that you have some sort of control over alopecia. Which just isn't true. Nobody knows what causes alopecia, or how to cure it. I have met hundreds if not thousands of people during my career who have alopecia....all have their own individual personalities and most are very calm capable people dealing with a very distressing condition. I'm not suggesting that alopecia is not stressful, but I just do not believe stress causes alopecia.
I hope this helps you and your mum.
Hugs
Rosy
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Permalink Reply by grandma concerns on
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totally agree
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Permalink Reply by Karen's Wigs on
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The problem is your mother and not AA. Some people have to place blame in order to cope. Perhaps you can forgive her - if not for her than for yourself. Be well.
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Permalink Reply by Debbi Fuller on
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I would print out this letter that you wrote to AW and give it to her. Ask her to read it in the privacy of her room and then see if, after she's read it, it sinks in that this is harmful and hurtful to you. The letter acknowledges all the help they've been and that she is supportive 99% of the time and it shows that you appreciate all their help. There is NO medical proof that stress causes alopecia although we all know that it can play a role. There are a lot of us who have alopecia who are the most stable, financially responsible, totally focused etc. etc. etc. and we STILL lost our hair so her argument doesn't hold water. I always tell people, "if stress caused alopecia, everybody in Iraq would be bald!" She needs to understand that you don't have any control at all over this. She can help you to be calm and serene by avoiding this kind of useless blame game but it won't grow your hair back!
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Oh, I am so sorry to hear your Mum treats you like this!! As a mum of a teen who recently (this year) lost all his hair to Alopecia totalis I can only off the excuse for your mum that SHE is probably more stressed and grief struck by your hair loss than you are and it makes her look for something to blame.
Alopecia is an autoimmune sickness so it is no more your fault than it is child's when they get diabetes or people having heart attacks or getting cancer. ALL sickness is stress-related. If it was simply stress-related ,however, I think I'd be bald not my son.And a lot more of us would be, too..
PLEASE investigate the role of gluten in your autoimmune disease. Check out William Davis's Wheat Belly , and the Gluten Summit including the work of Alessio Fasano, MD, one of the world's leading cutting edge researchers on autoimmunity and coeliac's. Aopecia is an immune system gult-mediated disorder (whether there are gut symptoms or not. !) Just because your doctor doesn't have the answer (ours shrugged his shoulders and said, "At least he's a boy" Another said dismissively, "It's not cancer!" and told us to return when new autoimmune symptoms such as joint pain manifest) It doesn't mean the answers are not available. My son has an identical twin who has all his hair and we know the difference between them is in their medical history -- our son with alopecia suffered a severe vaccine reaction and has been treated with copious dangerous antibiotics.
We have been thoroughly gluten free here for about five weeks and already my son's whitened fingernails are healing. They're growing in normal! All the cases we've investigated of supposedly "spontaneous reversal" involve grain or gluten-free diets or restoration of gut flora (through probiotics) We're heading this way -- I'll keep you posted!) Be brave and forgive your mum. If it was just stress, she'd be the one losing her hair.God Bless you!
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I have literally just posted a blog about stress and alopecia - the moderators should let it out in a second - I know it is scary but I did recover after losing 2/3 of all my hair due to stress. Only thing is, I had no idea I was stressed. Keep strong x
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Permalink Reply by kitty on
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This is, of course, ridiculous that your Mother would blame your Alopecia on you. She is probably just super frustrated that she cannot solve this problem (we parents hate feeling helpless). If she says things like that again, write it down verbatim and make her go with you to a counselor so you can explain (calmly and with a third party present), how she is making a not great situation worse. Make sure you continue to do something you love as you work your way thru this. Good luck. Remember, this is only a game changer if YOU let it be.
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