How can I help someone with TTM?

 (Info directly from trichsters in their own words)

Not all TTM sufferers are the same. People pull for different reasons, in different places, and at different times. Some people pull a lot and some a little. And everyone has their own ideas of help.

First thing to do is ask your loved one (the TTM sufferer), "What should I do when I see you pulling?" Second is to listen closely to their answer. Communication is the key. They may have been afraid in the past to come out and say what they have wanted and your asking might help to open up those lines of communication. Many TTM sufferers really are not’t sure what they want or what will work. So both of you may need to try out a few ideas before you find one that works.

Remember that communication is a 2 way street. They may be embarrassed and respond by being angry and defensive. They may shut you out and refuse to talk about it. If they will not discuss the issue, then its probably best to respect the silence. What you can do is be there when they are willing to talk.

I have asked some TTM sufferers what they would want they’re loved ones to do when they see them pulling. This is a sampling of the responses I got.

"I think it would be of great help if my husband could rub my head or brush my hair or something that would satisfy that sensation that makes me want to pull. Also, if we spent more time in the same room together it would help. But we don’t and I won’t ask him to rub my head or brush my hair, because I hate admitting that I have a problem."

"If the love one could gently draw attention to the pulling(if your alone). Some people pull unconsciously and need someone to help clue them in. Don’t do this if other people are in the room!! Or form a secret signal that won’t be obvious. Hug the person. Or a shoulder and neck massage would be good. My muscles are always tense when I pull. If I can relax the muscles, it gets rid of the urge at least temporarily. Remind them to take a few deep, long breaths."

"Hold the hand that is doing the pulling and tell this person that you love them."

"I think that I would like someone to gently rub the pulling area that is bothering me. Or maybe just a general massage. The reason I don’t know is that my husband won’t humour me, he’s too lazy. The reason I think this would help is that it may calm me. Also, perhaps we over groom ourselves because we need socialising that we are not’t getting?"

"What I would suggest to seeing him or her pull would be toĽ ..

II. Distract him or her with something else to keep his mind busy. But do it without saying ANYTHING about his or her pulling.

III. Gently hold his or her hands and tell them that you love them.

IV. Ignore the behaviour, but stay in the same room (they will either stop or retreat to another room). If they retreat, let them. The need is so strong sometimes that only pulling will ease their minds."

"I may not be typical but the best thing someone can so for me is to not mention it at all. Except to say that I look okay if I ask if my eyebrows are on straight(if they ARE straight). It hurts me for someone to say, "Ah, ah, ah, you’re doing it!" Also making an effort to be educated a little helps. It validates my feelings and actions. When I got married my best friend helped me with my make-up. That showed me more than she could say. Nothing that anyone said has ever stopped me from pulling. But love helps us to feel better."

"For myself, I do not wish to be treated like a child and told what to do. That pressed my buttons. I started pulling as a response to abuse that included encroachment on my boundaries, and I get furious if someone embarrasses me by saying anything. I think that I would prefer a friend not say anything at all if they saw me pulling, but no one has ever seen me pull. I think if you see someone pull, you should perhaps mention it and offer assistance, then establish between the two of you an acceptable response. NEVER, EVER say, "Why don’t you just stop?", or "Doesn’t it hurt?" or anything like that."

"Don’t say, "Why can’t you just stop?" , "Why are you doing this to yourself?", or "Why can’t you do something else with your hands?" And certainly don’t yank the person’s hand away from his/her head, eyelashes, eyebrows, etc. Maybe the best thing to do is be supportive, talk to the loved one with TTM. Only when he or she wants to talk about the pulling. Don’t force the issue."

"I would want that person to first remind me I’m pulling, in case I’m doing it unconsciously. Ask me if I want my hat or silly putty, in case I can’t get out of the trance. Talk to me about the "issue" if there is one, and that’s why I’m pulling. Change activities with me so I won’t pull. For instance, shut the TV off (only if I agree) and go outside with me. Play cards instead of reading. If we can go out to dinner or a movie, then go. Visit friends. Never say "Stop that!"

Children who pull deserve the same respect as adults. Remember its a disorder they are dealing with not a habit. And being there for them is the best thing you can do. Here’s what some mothers do for their children with TTM.

"These are some of the things I have done for my daughter with TTM. Spoke to her teacher and told her about the problem. I told her I didn’t want her scolded when she sees her twirling her hair, but to remind her to play with her finger puppet. We got this neat finger puppet from the Nature StoreĽ it’s a bumble bee that fits her index finger perfectly. Then she wears it she can’t pull with her right hand which is the one that does the damage. I have also given her an incentive of a "Beanie Baby" for each week that she doesn’t pull. She has still been twirling but hasn’t done any further damage in the pulling it out. We’ve also tried putting a rubber band around her fingers to remind her not to play with her hair. Also got her ears pierced and she twirls her earrings instead of her hair."

"I have found a support group in our area for our daughter. Our whole family goes with her for support and to learn more about it. We’ve sought out professional help, and are looking into behavioural therapy next. I have stopped blaming her and threatening her with punishment."

V. WHAT ELSE CAN I DO TO HELP?

These five responses that one person sent me, sum up what everyone has been telling me they want.

VI. Be  as non-judgemental as possible.

VII. Learn about the problem and possible answers to it.

VIII.Be there as emotional support.

IX. Keep the lines of communication clear, including joint counselling if it would be helpful.

X. Unconditional love.

I would offer one suggestion: postive reinforcement, like "hunny see you’re trying so hard with your hair, how about going out for dinner?"...maybe bringing home flower, maybe saying I want to help you conquer this monster...let’s get game plan going.

This is somethings I read someswhere, and I thought it was great!  A message to men, but can be very applicable to people trying to help us:

One book I see isn't on your list, "Men are from Mars, Women are from Venus." I've read it and it is great. According to the book, you may be suffering from the "Mr. Fix-it" problem. This kicks in whenever she comes to you upset about something and you try to solve the problem. I'll quote something from the book.

P.21--  "If a man does not understand how a woman is different, he can make things worse when he is trying to help. Men need to remember that women talk about problems to get close and not necessarily to get solutions.So many times a woman just wants to share her feelings about her day, and her husband, thinking he is helping, interrupts her by offering a steady flow of solutions to her problems. He has no idea why she isn't pleased. For example, Mary comes home from an exhausting day. She wants and needs to share her feelings about the day. She says, "There is so much to do; I don't have any time for myself." Tom says, "You should quit that job. You don't have to work so hard. Find something you like to do." Mary says, "But I like my job. They just expect me to change  everything at a moment's notice." Tom says, "Don't listen to them. Just do what you can do." Mary says, "I _am_! I can't believe I forgot to call my aunt today." Tom says, "Don't worry about it, she'll understand." Mary says, "Do you know what she is going through? She needs me." Tom says, "You worry too much, that's why you're so unhappy." Mary angrily says, "I am not always unhappy. Can't you just listen to me?" Tom says, "I am listening." Mary says, "Why do I even bother."

"Without knowing about life on Venus, Tom didn't understand how important it was just to listen without offering solutions. His solutions only made things worse. You see, Venusians never offer solutions when someone is talking."(P.22)

Women talk to releive tension. They don't want solutions. When you constantly try to make her feel better (you wrote: "I have attempted to minister to her according to all that I understand to be required of me."), all she hears is that she has no right to feel a certain way-that her emotions don't count. What happens is over time, she begins to fight to have her feelings validated. Just listening with empathy is the best thing when your wife is having problems. Practice that.

I would offer one suggestion: postive reinforcement, like "hunny see you’re trying so hard with your hair, how about going out for dinner?"...maybe bringing home flower, maybe saying I want to help you conquer this monster...let’s get game plan going. Also, more hugs, compliments, bringing home flower, writing note of encouragement, etc.

Also see the section 'Parents support group'   for a great piece on parent and children with trich, very applicable to other loved-ones too.

Another great piece at 'Support group for youngsters' - a letter to a trich-child