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Honesty about alopecia
I would like to ask a general question, and get your opinon, to all alopecia sufferers. I just had a huge row with my daughters father about how to deal with our daughters Alopecia.
She is 6, I want to take the honesty approach. I tell her all, and don't hide anything from her. He tells her everything is fine and her hair is growing back, which it isn't. He thinks we should be "positive". I think we should be honest. (we are separate).
She lives with me, and everyday I see her hair falling out, and everyday she sees her hair falling out, so how can I tell her that her hair is growing, when she is losing it at an alarming rate?
I believe that if I am honest with her she can prepare herself and get used to the idea, it is the 3rd time in her life it is happening.
What is your experience, he thinks I am being mean by telling her the truth.
My stress levels are sky high right now.
Replies to This Discussion
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Permalink Reply by Karen Peterik on
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Dear Fidgety,
I agree with you that taking the "honesty approach" is by far the most satisfying answer you could ever give your daughter. She will sense this intuitively. Trying to be more "positive" will only lead to more questions when she is met with disappointment. By being honest, you are teaching her to understand that life doesn't always give us what we want and we must look for a way to find happiness in spite of this. If she has indeed, been diagnosed with some form of Alopecia, then the facts she needs to know are clear: she has an autoimmune skin disease with no known cause or cure at this time. Her Alopecia will not negatively effect her general health but it will cause her hair follicles to stop growing hair. No one knows when or if they will ever decide to start re-growing her hair. And as you have already experienced, they can go back and forth with their decision.
So, the honest short answer to whether her hair will grow back is I don't know. But you all need to be prepared for the most severe case of hair loss: total body, long term hair loss.It could happen, but then again it may not. After living with the most severe form of hair loss myself for over 23 years (Alopecia Universalis), I would like to share my perspective on this.
When something is out of our control, it is unsettling and can begin to exert an unrealistic power over us. One's entire life is negatively impacted by this out-of-proportion fear. So, the question then becomes How do I remove the power that Alopecia has over me and re-proportion it to a very tiny part of my life?My answer was to firstly accept what has happened unashamedly and realize that my true self hasn't changed at all; then to share what I have learned with my family and close friends/workers so that they too are educated about Alopecia (and thus the burden of hiding something is lifted) and finally to move forward with my life toward feeling the best I can about my appearance and thus regaining my temporarily lost self-confidence.
This last part does require a bit of research because I am talking about finding a good hair replacement product IF your daughter gets to the point of needing one. There is always a time when one realizes that having very little hair with no true hope of re-growth is just as draining on the psyche as having no hair at all. She may experience this stage or she may continue to lose her hair completely, but before that happens, most people are likely to want to seek out a hair replacement solution. Take your time to educate yourself on all of the options available to you. It will be well worth your effort moving forward.
Younger girls can sometimes experiment with wearing a cap or hat or are even comfortable without hair. And if your daughter seems to be going this way, great. What Is important is that this decision come from your daughter alone, without her having to weigh in various adult prejudices. This is her arena completely and she must know that she has her family's unwavering love and support no matter what she decides. And she also has the right to change her mind as she gets older and wants to find different ways to deal with her Alopecia. Every developmental stage will bring a different attitude toward her hair loss - it's natural and healthy to re-examine one's feelings about this from time to time. Even as adult Alopecians, we continue to have little "hurdles" to jump over now and then. Life goes on and we are stronger for it.
Please know that you and your daughter are not alone with this challenge. There are many wonderful people out there who have gone through this, are going through it right now, or will have to face this in the future. We are all here to help each other because well, life is well worth it!
You have my empathy but I hope also my strength in approaching this with a realistically positive attitude. It always comes down to the things that are truly important in life and fortunately, hair just isn't one of them. My strong belief is that facing this challenge straight on and moving through the steps of acceptance, sharing and researching a solution will eventually put the whole hair loss issue into perspective for you all and life will be beautiful again.
All my best,
Karen
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Permalink Reply by Debbi Fuller on
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As usual Karen, you have said it all and said it in the best possible way. I can be too blunt at times (as you know) but you always say it in just the right way! I agree with everything you said!
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Permalink Reply by jinna on
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My daughter was 7yrs old when she began to lose her hair at first since we didn't know what was happening with her hair we told her that it would grow back. The reason why my husband and I told her that was because we were unsure ourselves and thought it would ease her stress. once we finished with doctor appointments and dermatology appointments we began to ease her into the truth. We didn't feel it was fair to lie to her because she was the one who had to cope with her hair loss. We took things very slow and continued to give her small bits of information. Being that she was only 7 yrs old at the time. She is now 10 years old and her hair has not grown back but she is comfortable and has accepted the fact that it may never grow back. Each child is different and will deal with the situation in different ways.
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Permalink Reply by Dena on
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My daughter was 5 when she first started losing her hair. I did everything I could to hide it and I have to admit it was probably the wrong approach. I just assume she would be embarrassed so I bought a ton of hats, headbands, and scarves. I assumed the staring bother her like it did me, but she was 5 and didn't really care that much. At first she was terrified it was something worse. She had seen grandparents who lost their hair to chemo and was scared I was hiding something from her. I decided then to be totally honest. I wouldn't even speak to the Dermatologist without her present, because I knew it made her anxious. I made sure she understood exactly what was happening to her body (the best I could) and if the doctor recommended something in the end it was up to her whether to try the treatment. I figured there were no guarantees, so she should be the one to decide how much pain or irritation she wanted to go through. She wasn't thrilled that she might end up bald, but at least she knew that she wasn't going to suffer health wise. It was hard when it really started coming out, but once she finally lost it all she relaxed knowing the worst had happened and she was still o.k. She is 7 now, still bald, but is living her life to the fullest and is a very happy child. She does have a wig that she wears occasionally, but usually just to play in. It is to hot and itchy for a 7 year old to wear all the time and she is more concerned with comfort at this point in her life. I do have to admit my husband took a much different approach. He acted like nothing was happening. He just chose to avoid the whole topic. I think some men just have a hard time dealing with something happening to their daughters. I think sometimes they don't realize how strong their little girls might be.
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Permalink Reply by Kirsteen Forrest on
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So sorry to hear you're having a rough time with dealing with this. I too also believe that honesty is the best approach. I myself have alopecia and actually found the children to be the most inquisitive about it, but also the most accepting as long as you're honest about it.... It's adults who like to put things in neat little boxes e.g what it normal and what is not, what society says is accetable and what is not.... I just explained to my chidren and any other child I knew/met that everyone is different, e.g skin colour, hairstyle and colour etc, height, weight....but whatever we are, it's ok to be different, to be unique and to be special in our own little ways....
I hope this helps and wish you luck in dealing with this situation. I hope you and your childs father can find some middleground...Best wishes to you and your daughter
xx
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Permalink Reply by Ginny on
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I lost my hair in my late 50;s. I was still teaching and at the school we decided to keep it quiet as it was felt that the children would make fun of me and be rather cruel. I didn;t like this decision but went along with it. I moved to another school 2 years later and the principal agreed with me that the children needed to to be given honest answers. One day we sat the senior children down and I explained how alopecia affected my life, But what blew me away were the questions that the children asked me. They were so deep and profound.
wHAT A FREEING MOMENT! The rest of mytime at the school was amazing with total respect from all the students. So my advice to you is to keep on being totally honest with your child and not to censure your ex too much but celebrate the time when he is able to be honest with his daughter. Yo are doing the right thing in being honest with her. Good luck and remember to keep us all informed as to how you are both getting on
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Permalink Reply by Dorothy on
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I think honesty is the best approach, you can certainly tell her that there is hope that someday they might find a cure but tell her in a way that she can understand what her real situation is and everyone including her father must learn to deal with the reality so she can learn to love herself just the way she is.
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Permalink Reply by victoria mchugh on
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We decided to go for full honesty here. Our son is 7 & has no hair.He started losing it when he was 3.We went to all the skin specialist appointments together so we learnt about the alopecia together. When it started to go in patches, we were given a steroid lotion to apply. After 2 weeks the hair was all gone. Thats basically how its been ever since.......Every few months he gets a flurry of baby-soft white hair & then it falls out as quickly as it came. He has always been fully aware of whats going on with him which has cut out a lot of anxiety for both parties leaving us to accept the reality of the situation. Most people have only known him without hair - so much so that to see him with a full head of hair would be odder! Nothing can erase the memory of the expression on his face when he saw his own reflection after losing all his hair for the first time.....but we're of the belief that by dealing with it, as it happened, together, it was easier on everyone.
I think its become partly a coping mechanism of your child's father for himself as well as wanting to shield her from the full reality of the situation. He's not doing her any favours but I get that he's almost mourning the loss of her hair and u both want what's best for her. Communication is key so any conversations about her alopecia should be done with the three of you present (or even with the skin specialist also if you think a more factual approach, rather than emotional one would be better).
Either way, she has to know that you are united whatever you decide......She doesnt need extra anxiety for any reason and if she senses that your keeping something from her, her imagination could go into overdrive........
Keep it simple & be approachable for any questions she might have.... (& keep an eye on sights like this for tips & inspirations so she knows shes not going through it alone).........
You are all embarking on a fresh chapter as you adjust to her new look and it shouldn't be a reason to put obstacles in her way.....you should soar together :)
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Permalink Reply by Kathyk on
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Be honest and positive. And let her know how lucky she is! Remember there are disease a lot worse than alopecia. Since she is young, get her involved with an alopecia awareness group. In the end ... She will be teaching you about alopecia.
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The best you can do is to make sure she understands "she" is not her hair. Everyone of us has physical characteristics that we feel could be improved on. Make sure she understands that it may or may not return but either way she is still your beautiful daughter and you will help her to do whatever she feels she needs to make her comfortable. Sometimes just to have acceptance by those you love is enough. Your husband also needs to reassure her that hair is optional and she is fine without it. Now just an observation of mine to pass along to you, I am seeing more women shaving their heads now days. I truly think many are just fed up with the time they waste trying to get it styled before they can leave for work. Women and girls without hair look beautiful too!
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I was super positive about my boyfriend's hair for the first few months. Every time I saw a scerick of a hair I was like "yes, its' getting better, there is my mm of fact". I'd stroke his head attempting to compare whether it was more prickly then the last week. I think he didn't mind at first, however there were definitely times when he was like 'there's nothing there'.
I don't do that much anymore. It'd be nice if it all came back, but I'm not wishing that it'll happen as much as I did in the start. We both have more important things to talk about. Its also lost the power to upset either of us anymore. We still hope, and I am slowly convincing him to think more seriously about fake eyebrows (as without them he looks strange to non friends/family).
At the same time though, its important you both put up a united approach. Having both of you argue about how you're going to deal with it just tells your daughter that its much more important then it actually is. My parents used to fight when I was younger, criticise each other, it used to really scare me. Luckily I now know that's just eastern europeans, but its always stuck with me.
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