Sharing the diagnosis with "others"

[Parents! Get help here!]

My university aged child has been diagnosed with traits of BPD.  She is currently in DBT therapy and sees a psychologist weekly as well.  I really don't know what advice to give her as to who she should tell about this.  Her boyfriend knows that she has anger issues and knows that she is in therapy, but does not know the extent of it.  Frankly, I really don't know how long this relationship can last anyway.  It has been pretty rocky for at least 8 months now.  As far as I know, she has not told any of her friends, and my husband and I certainly have not told anyone about it except for our other children. 

My question to you is, are we doing her, and the whole BPD/mental health community a disservice by not encouraging her to share more information with the people in her life?  And by our not telling anyone in our life about what she is going through?  Every time I read or hear about how people in the mental health community are trying to tear down the stigmas of mental illness by talking candidly about their struggles, I feel a twinge of guilt about the fact that we are not talking about it.  Please be clear - I don't ever want my child to think that we are ashamed of her condition, because we are NOT. 

I guess what I am afraid of is people's uneducated and uninformed reactions.  I also am afraid that a future employer might somehow get wind of her diagnosis and not hire her based on that information.  I know that is a really long shot, but you know how we are sometimes amazed at "how small the world is"?  So it is not such an absurd fear!  And, let's face it, our children face pretty tough prospects; more than our generation did, so I don't want to make them even worse. I don't want anyone treating her differently.  But should that even be my decision?  My daughter has not indicated any strong feelings either way about the subject.

I also happen to think that depression and eating disorders and anxiety disorders are one thing.  BPD seems to be in a whole other category.  Maybe because it can't be "cured" or made better with medication?  Maybe because people are afraid of personality disorders (based on stereotypes in the movies)?

I often wonder how many other parents are out there, all around me, struggling with the same thing and yet we are all so afraid of telling each other.  Thank goodness for this forum, but sometimes it would be nice to talk to someone (not a psychologist - I tried that... .) or another parent over a coffee or a bottle of wine about our experiences.  Don't you agree?

I would love to hear what you all think about this and what your experience has been if you have shared the diagnosis (obviously with your child's prior consent!) with other people in your life.

[Maple leaf]

My university aged child has been diagnosed with traits of BPD.  She is currently in DBT therapy and sees a psychologist weekly as well.  I really don't know what advice to give her as to who she should tell about this.  Her boyfriend knows that she has anger issues and knows that she is in therapy, but does not know the extent of it.  Frankly, I really don't know how long this relationship can last anyway.  It has been pretty rocky for at least 8 months now.  As far as I know, she has not told any of her friends, and my husband and I certainly have not told anyone about it except for our other children. 

My question to you is, are we doing her, and the whole BPD/mental health community a disservice by not encouraging her to share more information with the people in her life?  And by our not telling anyone in our life about what she is going through?  Every time I read or hear about how people in the mental health community are trying to tear down the stigmas of mental illness by talking candidly about their struggles, I feel a twinge of guilt about the fact that we are not talking about it.  Please be clear - I don't ever want my child to think that we are ashamed of her condition, because we are NOT. 

I guess what I am afraid of is people's uneducated and uninformed reactions.  I also am afraid that a future employer might somehow get wind of her diagnosis and not hire her based on that information.  I know that is a really long shot, but you know how we are sometimes amazed at "how small the world is"?  So it is not such an absurd fear!  And, let's face it, our children face pretty tough prospects; more than our generation did, so I don't want to make them even worse. I don't want anyone treating her differently.  But should that even be my decision?  My daughter has not indicated any strong feelings either way about the subject.

I also happen to think that depression and eating disorders and anxiety disorders are one thing.  BPD seems to be in a whole other category.  Maybe because it can't be "cured" or made better with medication?  Maybe because people are afraid of personality disorders (based on stereotypes in the movies)?

I often wonder how many other parents are out there, all around me, struggling with the same thing and yet we are all so afraid of telling each other.  Thank goodness for this forum, but sometimes it would be nice to talk to someone (not a psychologist - I tried that... .) or another parent over a coffee or a bottle of wine about our experiences.  Don't you agree?

I would love to hear what you all think about this and what your experience has been if you have shared the diagnosis (obviously with your child's prior consent!) with other people in your life.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[wendydarling]

Hello Maple Leaf

I understand your questions and your concerns and it's a great conversation for us to join and learn from each other.

My DD28 was diagnosed July 2015 co-morbid with depression, anxiety, eating disorder, alcohol abuse ... .

Our approach from day 1 was, is to be open and tell everyone in our lives (that is a lot of people! ), we did as we'd do if she'd broken her leg. The response was absolutely amazing and continues to be. We've taken on the role of educators and this has helped us both and most importantly my daughters journey towards recovery, she's a stigma fighter, tweets for mental health. 

We are loved, supported and most importantly accepted, that includes my work colleagues and my daughters employer. Yes, as you ask people have come forward and shared with us, eg a colleague at work has been through the ringer with her sister (3 young children) being hospitalised and she felt so very isolated, now we work together 

I've also learnt people feel able to come to us for any kindly support they are in need of.

My daughter needed me to validate her diagnosis and her journey, I have and I do 

I recognise our route may not suit all and other approaches fit the circumstances we find ourselves in.

I hope this helps your thinking through. Like you I'm interested to hear back as I appreciate how isolating a BPD diagnosis can be and is till we talk.

WDx

[devastatedmom]

Hi Maple leaf and welcome.

I think this is a question that does not have an easy answer, because we all have such different circumstances.  I believe that if your child is over the age of majority, then the choice should be theirs as to who to tell and whether or not to tell.  After all, if a loved one had cancer, we would certainly allow them that luxury, and there are many people with various illnesses who don't want people to know.  That said, this journey is somewhat ours, as parents, as well and we absolutely need to vent to the people around us even if only occasionally. 

I try to gauge on a case by case basis, if you will.  I really haven't told a lot of people about my DD24, and neither mine, nor my husband's family know.  They would definitely not understand and our choice not to tell them is simply to avoid further stress on top of the stress we already have.  I have told one friend who I trust; a couple of coworkers; and my boss, who I have had to tell because of things that have arisen where I have had to take time off work.  One of the coworkers who I have told has a stepson with mental illness, so when I am talking to her I can tell she totally understands.  One of the others though, even though we are quite close and often share our struggles, I can see her kind of "shut down" when I am speaking to her because, let's face it, listening to someone explain the ins and outs of BPD is like following someone through a maze at times!

I think in your post you have nailed all of the exact reasons why many of us are fearful about others knowing about our child's diagnosis.  One of my main concerns is the fact that BPD is so misunderstood (including the name, argghh ... .).  There are so many stigmas, and many people, including some therapists and psychologists, still believe that everyone who has BPD has suffered from childhood abuse, and there are also many people who, like you said, believe in the Hollywood version of BPD, that everyone who has it is dangerous, so I think we need to exercise caution in who we tell lest they will point fingers at us and worse yet, that they point fingers at our daughters.  Some people are just plain scared, because they have never encountered something like this in their lives.  I know I never thought I would!

I think you make a very good point about trying to break the stigma, but I think this has to be done slowly and subtly, and not at the expense of our child who is suffering.  I don't know what form that takes, but I guess what I am saying is we don't all need to wear a big sign that says "my child has BPD" - if that makes sense.  Wendydarling, I am so glad to hear you say that you have told everyone in your lives and that you have been accepted.  I dream of a world where this will be the case for all of us and our children, but I know for myself and my circle, we are not there yet.  I do, however, make it clear on social media that I am a mental health advocate without naming a specific disorder.  I have a son with severe ADHD, OCD and Hypochondria so my support is for him as well.  Maybe if my daughter is able to get into recovery, I will be able to be more specific.

Also, I wanted to say that if you are loving and supportive of your daughter, I don't think she will ever think you are ashamed of her.  I think if the subject comes up and you are in the position of trying to advise her, you could simply share some of your very well-articulated concerns about it, and she can take it from there.  Unfortunately, I also think that our children have to learn these things for themselves as well, and once they do and they've had a few experiences, either good or bad with respect to sharing their diagnosis, they can formulate their own strategy.

[Forevermom]

I say she has something like a high-functioning autism that makes it very hard for her socially to connect with others. That she has a lot of anxiety and pain around her social troubles, and to deal with it she was doing some very scary things. So she is in treatment to learn better healthier ways to cope. And we are also learning how to help her. This seems to make sense to people and help them feel compassion because it's more of a brain disorder (and therefore not her fault, my fault, etc).

[Piper1234]

I am new to this forum but I have found out even my small friend support group tries to understand but actually have no idea and eventually they decide my child is just a brat and as parents we are just letting ourselves be walked on. So yes and no. You need to share for support but be careful who you share with. Some people just judge and don't wNt to learn. So find people who really care. Sorry that sounded so negative...