Status of Women Committee on March 5th, 2014

[Lisa LaBorde]

There wasn't anything available in the community. The barriers I faced were my doctor didn't notice it, identify it, and label it as such right away, so my child got much more ill than she needed to be. Then when I tried to find community treatment, there was nobody in the community practising FBT.

There were clinicians linked to the hospital program, but I wasn't able to access them prior to being in the hospital program. I don't think that has changed much. I think there is one therapist dealing with pediatrics privately in Toronto. That was an issue.

The financial burden was an issue. I had to take time off work. I took out a line of credit. It was very difficult during that time.

I would say education and finances were the biggest burdens.

[Tilly O'Neill-Gordon, Conservative, Miramichi, NB]

How can we equip children with the tools to resist the pressure to conform to beauty norms? We've heard much about this and that girls especially are being pressured into conforming to these beauty norms. What are some ways we can help these young girls to resist this strong pressure?

[Lisa LaBorde]

How can we help them resist it? By teaching them to be critical consumers of media. I think the schools are doing work in that aspect. I think there is a difference between eating disorders and disordered eating. I think we have to differentiate between the two. My experience, and I know the experience of many parents, is that they will say they don't feel the media actually contributed to their child's eating disorder in the sense that they feel they didn't start it, that it wasn't the precipitating factor. It may have contributed to maintaining the eating disorder once their children became ill, but they didn't see it as a precipitating factor. I think actually teaching our children how to be critical and how to understand the images and the media messages that they're receiving is important.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much.

I now give the floor to Ms. Murray for seven minutes.

[Joyce Murray, Liberal, Vancouver Quadra, BC]

Thank you very much, both of you, for coming and sharing your stories. I can only imagine how difficult it is to be wrestling with a disorder and deadly illness of the brain that is not easily understandable and there aren't that many road maps for, and to work with your child and not know if you're going to succeed or not. I just want to honour your courage and strength, both of you.

I'm new to this committee so I haven't been through some of the other testimony and panels, so I'm going to ask a couple of questions to better understand.

In calling this a deadly illness of the brain, do the brain changes result from the reduced eating, or is it a brain illness that contributes to the reduced eating?

[Carly Lambert-Crawford]

Who would you like to answer that?

[Joyce Murray, Liberal, Vancouver Quadra, BC]

Whoever has some thoughts on that can answer.

[Carly Lambert-Crawford]

It's both. It's very much both. We know there are predisposing factors in terms of genetics and biology if there's anxiety, but we also know that when the brain is starved, it's very difficult to have cognition and to even be able to have therapy when you're that underweight. The newest research that they're doing out of Toronto will tell us that it's very much both, and that we have to rule out one in terms of how a lot of the treatments will make you get to a certain weight before they will even engage you in any sort of therapeutic intervention. Then they will see what it's like in terms of how to engage them in any sort of therapeutic intervention, as I've said.

[Joyce Murray, Liberal, Vancouver Quadra, BC]

I think Ms. LaBorde mentioned precipitating factors. Is there always or usually a precipitating factor? Is trauma a part of this, or is it not necessarily but sometimes?

[Carly Lambert-Crawford]

It can be. Not necessarily but sometimes would be the answer.

I think what we know is that certain personality types may be more predisposed. If you're an anxious child, or if you have a lot of worry in your family, or as Lisa mentioned, any sort of mental illness in itself, we notice there can be a genetic component. It doesn't have to just be an eating disorder, but if there's depression or if there's anxiety, that can play a role.

[Joyce Murray, Liberal, Vancouver Quadra, BC]

I'm interested in understanding more, partially because the testimony you've given so far is so similar to what I've been hearing for six months in the national defence committee study of ill and injured soldiers with respect to PTSD.

Some 30% of people get an operational stress injury, but the other 70% don't appear to, and 15% appear to suffer from PTSD from similar situations, while the other 85% don't. There's some predisposition even when there's a trauma is what I'm hearing, so that's a deadly illness of the brain as well, which is often accompanied by depression, anxiety, and addictions. It just sounded so familiar. Also, the impact on families and the absolute need to consider the family's well-being and to support the families are so parallel as well.

Of course, there is the issue of stigma and how we reduce the stigma. What would you recommend in terms of a societal shift in seeing this as a brain injury and not as something to hide? Are there some principles you would suggest for how to continue moving forward in our society to accept, support, and not stigmatize eating disorders?

[Lisa LaBorde]

In terms of removing the stigma, everybody thinks they know what an eating disorder is. I think it's about shifting that perception from the sort of after-school special idea of the eating disorder to the reality of what it is. I think shifting it so that we understand that any of our children can be affected by this, that it is a biological brain disorder, that it is not something children choose, that it is not something families create.... You can't give your child an eating disorder.

I think the notions that exist now lead to the stigma. I think there's a distancing, because people think they understand it and they think it's something that doesn't happen to them or won't happen to them. I think we do have to change that.

On the new evidence that's coming out now, I think the public perception lags behind what we know now about eating disorders. Some of this is about making that trickle down to the general public, what the clinicians know, what the researchers know now, today, in 2013, and having that widely disseminated in a way that reaches the general public.

[Joyce Murray, Liberal, Vancouver Quadra, BC]

Are the general practitioners and the medical community an important place to start with that? How do we contact 36 million Canadians with education about a misunderstood biological brain injury?

[Carly Lambert-Crawford]

I personally think the other part of it is that it's an illness that is seemingly about food, which most people don't even think about. That makes the general population think that it's very simple. I often think that if people found out that I went to rehab for a drug addiction they would sympathize with me a lot more. However, because it's food they think, “Just eat,” or “Just stop eating,” or whatever your challenge is.

The other part of that, too, is that eating disorders are very rarely seen under the umbrella of mental illness. When we do all of these mental illness campaigns in terms of Let's Talk Day, or anything like that, eating disorders are very rarely profiled. I know that all mental illness needs to have more awareness, but that would be one place where I would like to see it shift as well.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much, Ms. Murray.

Mr. Young now has the floor for five minutes.

[Terence Young, Conservative, Oakville, ON]

First of all, thank you both for your time today.

I wanted to comment that if there was a vote here today for mother of the year, you would win that from this committee. We admire you very much.

I want to ask you a couple of things. When you talked about a new skill set for parents, do you have any ideas how that could be accomplished by way of training? You said you wanted to start working on healing the patient quicker, that is, getting the patient's training faster or with some kind of skill set.

Do you have any ideas how to do that?

[Lisa LaBorde]

Linking parents to other parents who have been successful in working through FBT is one easy way to do that. There are best practices out there among parents who have gone through this, and sharing those is a very simple way to do that. It's a learning curve that's steep, but it's one that I think you manage quite quickly.

[Terence Young, Conservative, Oakville, ON]

I'm thinking of a class at a local clinic or a local hospital where they can say, “There's a class this month, it starts on Monday. If you can take five days off work, or your spouse can, or something, we can get you to be part of the solution as soon as possible.”

Is that possible? Would that make that work?

[Lisa LaBorde]

I think so. However, the way that caring for a child with an eating disorder works is that parents who are in the process of actually caring for their children would not be in a position to take five days away to sit in a classroom. The therapy or the treatment is actually feeding your child, and under FBT you're feeding your child six times a day. In the beginning a meal can take two or three hours or a meal could take an hour. Then you have to watch to make sure that certain things aren't happening after a meal. Having the parents out of the home for the training wouldn't work for that length of time. Linking parents to Internet training and having psycho-educational training for them that is easier to absorb in small bits is a possibility.

[Terence Young, Conservative, Oakville, ON]

Thank you.

[Lisa LaBorde]

I was just going to say—

[Terence Young, Conservative, Oakville, ON]

Go ahead.

[Lisa LaBorde]

Sorry, go ahead.

Thank you.

[Terence Young, Conservative, Oakville, ON]

I'd like to ask Carly Lambert-Crawford a question.

We know that misdiagnosis is a problem with a lot of girls with eating disorders. You mentioned that somebody prescribed anti-depressants for you which created a confused mess.

Can you please describe how this off-label prescribing made your situation worse, or at least did not improve it?

[Carly Lambert-Crawford]

Part of it was I was diagnosed with the anxiety and the depression very early on, probably when I was around 15. The medications weren't coupled with any sort of therapy. They kept trying me on different medications because it wasn't working. The medications weren't making me eat and they weren't making me get better. It's hard for me to pass judgment, but I will; it wasn't done properly.