Thursday, February 3, 2011

Shhh... Don’t Tell?

Yesterday, we met with my son’s therapist and after discussing how to navigate friendships with other kids as my son gets older, our therapist strongly encouraged us to tell our son to keep his illness private. He explained that it wasn’t my son, but the world that has a problem with mental illness and that if friends of his found out, even a best friend, the parents would have a problem with it and would end the relationship. He explained that we needed to take this decision of disclosure out of his hands until he’s an adult.

I’m struggling with this today. First off, we’ve tried very hard to help our son understand that his illness is nothing he should be ashamed of, that mental illness is like any other illness and that many other people suffer just like him. He’s felt comfortable in the past to tell a friend about his illness and at the time I let him know how happy I was that he had a friend he felt close enough with to open up with.

On the other hand, we’ve already seen relationships end when his friend’s parents found out about his illness. This is devastating and hurts deeply.

So even though I understand the reason first hand, I can not imagine sitting my son down and telling him that he should keep his illness private because the world doesn’t understand. I can not imagine how this can be done without bringing on feelings of shame and self loathing.

This whole situation disgusts me.

I feel angry at the world for this stigma.

I feel sadness that my son needs to keep his illness private when he wants to share.

I feel scared and nervous about where we go from here, so I’m reaching out to you for your thoughts and any experience on how you’ve handled this with your own children, and if you have regrets either way.

13 comments:

  1. I am a diagnosed obsessive-compulsive, though my disorder is nowhere near the extreme it could be.

    I have two minds on this. One: the better part of me says, like you, that his disorder is nothing to be ashamed of--would you tell a diabetic to keep it a secret? Of course not.

    Two: unfortunately, as you posted, there is a stigma, and it is strong. Misperceptions are rampant. In my experience, my disorder has been used against me--multiple times, by multiple parties. I would hate to see people (teachers, parents, friends) write your little man off because of a chemical imbalance--it is wrong, and evil at the level that racism is evil.

    So I wish I could help--I don't have any helpful advice. What I do know is that you will come to the right conclusion, whatever it is. As a special-needs parent, I know Mama intuition is a real thing, and you know better than the docs do.

    Hugs.

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  2. Hi!

    I understand about the stigma of this all. In fact, our son's therapist told him to talk about it to people he can trust. I have Bipolar Disorder myself and I was so ashamed and scared to talk about it for years. The stigma of illnesses like our sons' is that people are uneducated and don't want to learn about it. They will learn about cancer or diabetes but not mental illness. I don't understand that.

    I started talking about it on my blog. That was my first way to come out and say something. My Mom's family embraced it with open arms. My Dad's family told me I was crazy and insane.

    It is so important that he have a voice about his illness. It is nothing to be ashamed of at all.

    I feel for you and your son. Do you have a good working relationship with this therapist? Have you told her/him how you feel about keeping it quiet?

    Keep telling your son not to be ashamed. Keep him talking to you about it. He is a precious kid who needs a voice.

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  3. I have had many years of perfecting the technique of telling others I have Bipolar disorder...what is the key to doing so successfully? Thick skin. I do not think he should tell anyone until he can handle their reaction which could be anything from anger, resentment, and maybe even not caring. Many people just do not care if you are bipolar. They think you should keep your problems to yourself. It is harsh out there...use your best judgement because he is still so young and impressionable. I would hate to see him ashamed of this illness but on the other hand I would hate to see him devalued by another who found out he was bipolar. Such a fine line to walk. I wish you both the best.

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  4. Wow. That is a tough one! We have always told Mary that her illness is nothing to be ashamed of. It is the way that God created her and He doesn't make mistakes. However we have cautioned her to be sensitive to others in how much she shares. We don't want to scare people off by the fact that she has been suicidal. There are always risks of getting hurt in any friendship. We have felt the pain of lost friendships because if her illness but we have also found great support from those who do truly care about her. I think overall people are going to see behaviors that they don't understand. If we are open about what is causing the behaviors maybe they will be more compassionate and understanding.

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  5. We have to tell friends and families. They are going to see the behavior and what will they think if they see it, but don’t know why they are acting that way? If we are honest and help educate them on this awful illness, the ones who really love us and our children will understand. Will are children lose friendships? Yes, they will, but not because they know they are bipolar, but that they can’t handle the behavior. It takes a special kid to be friends with a bipolar child, and they are out there. My son is blessed with two good friends who have seen him at his worst and still hang out with him and even have him stay the night. So we had to tell the parents also since he is spending the night and they have no problem with him. They just know if he is getting out of control to call me. We refuse to hide out in the house, hiding from the world because our son is SICK!! We can only fight stigma by coming out with this, and showing the world there is nothing to be ashamed of!! If we don’t speak out then it will always remain a stigma. My son will stand in line and tell the checkout lady “Hi, I am bipolar”. Do they look at him strange, sure they do, but he doesn’t care. It is who he is and he doesn’t care what you think about it!!!! I tell him stand up straight and be proud of the special unique child you are and never let anyone tell you otherwise. Have people made mean comments, sure but we talk about them and how it makes him feel and what he could say to them if they say it again. We video tape his rages and his odd behavior and hope to one day when he is older to make a documentary about it, so he can help other kids understand what they are going through with this illness. If he can be brave enough to let everyone know of his illness, all of us can do the same!!!!!!

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  6. It is not as simple as him keeping the information private until he is an adult. It is very likely some of his friends may see some of of your son's struggles with his mood, and it may be helpful for him to be able to explain it to them in terms that are they can understand that is not frightening. He would need your help and his therapists with this, to come up with something that is not too intimate, but helps explain the experience. It does not have to be a complete disclosure, but it would help for him to have the tools if the need arises.

    Then there is the need to help kids understand who they can trust with private information. This is just a normal part of growing up, and sometimes there will be some hard lessons when they put too much trust in an untrustworthy friend.

    Every family and situation is unique in some ways, and you need to come up with a plan that works for yours.

    Betsy

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  7. I agree with Betsy.

    In our experience, any friend that your son gets to know well will know he has 'something' whether he tells them or not. My son can't hide it from people he knows well. That said, hopefully those kids, once they know him well, won't care. That has been our experience. And we don't tell people until we know them well enough to know we can confide in them and want them in our lives.

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  8. i think it's one of those things that's gets better as we age, if i had known i was bipolar when i was younger (was not diagnosed till i was in my 20's) i would have kept i a secret for that exact same reason. now that i have such a close group of friends they all know, they see me take my meds...even new friends see me take meds they just do not know why.
    also since they have know me so long they are use to my...odd behaviors we shall say that are caused by it, and they have just become part if my personality.

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  9. Thanks for all the feedback so far, you all bring up such good points, I’m still trying to soak it all in, this is sure a tough decision!

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  10. He could talk about it in a more safe way, like saying something like "Sometimes I have trouble with my moods" or "Sometimes I feel angry and have a hard time calming down" or whatever he feels comfortable saying, rather than using a label or diagnosis to describe himself.

    That way he would be just describing his experience and the reality of it, but not putting a label on himself that may follow him in ways he does not like later on or stigmatize him.

    I think hiding things for fear of how we will be perceived is harmful, or it has been in my personal experience at least. It's a lot for such a young child to grapple with but I think your approach of telling him to not be ashamed is the right one and telling him to keep this huge part of him a secret could be really hard on him as well as contradict what you've already been teaching him.

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  11. I'm sorry but I think that's really stupid of his doctor to say. He should be able to tell who he wants when he wants. There's only a stigma if you let there be one, it's only an issue if you let it be one. He knows not to be ashamed of it because you guys aren't acting like it's the end of the world. You accept him and love him. When they told me, I was still in the hospital and when I told my friend some of them freaked out and told me never to tell a soul. My foster parents and brother are super supportive and encourage me to talk about it.

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  12. I agree with Hayden... I think this is a really stupid thing for a therapist to say! We can only help remove the stigma by educating others on mental illness, letting them see that it happens to "regular" people, and that it's NOT something to be ashamed of. If we start acting ashamed of the illness, we are just as bad as the rest of our ignorant society.

    If kids don't want to be his friend when they find out, then they're not the kind of kids he wants to be friends with, anyway! And don't get me started on the parents... if they tell their kids not to be friends with someone that has an ILLNESS, then YOU don't want to associate with them.

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  13. I'm trying to get together with other parents who have kids like mine. I think if they can't deal with your son they are not worth the time anyway. Find people who will try to understand and be friends with them. I think the idea of having the therapist pick an appropriate way to tell them works best. Find famous people on the net who have the illness...that helps too.

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