Advocacy Mondays: 5 Questions Answered by Kitty Westin

Happy New Year to All! Wishing for 2015 to be full of Hope and Fierce Strength!  We are continuing our Parent Advocacy Series on Mondays.  In this work we can often feel like 'lone wolves' howling at the moon.  It is important for us to remember that we are not alone and that there are those who have cleared and are continuing to clear a path for us so that our steps forward are steady and strong.   Today's post is written by a pioneering parent advocate in our community.

Kitty Westin is the founder and former President of the Anna Westin Foundation which is now known as The Emily Program Foundation. The Anna Westin Foundation was started by Anna’s family after Anna died of anorexia in 2000. Kitty is on the board of The Emily Program Foundation, the Eating Disorders Coalition for Research, Policy & Action, and she is a former member of the Minnesota Governors Advisory Counsel on Mental Heath, the Minnesota Mental Health Legislative Network and numerous other boards and counsels.

1.  How did you find your path to parent-advocacy?   

I began doing advocacy work in 2000 after my daughter, Anna, died from anorexia. She faced discrimination from our insurance company because she had an eating disorder and, according to them, the treatment her doctors recommended was not medically necessary. The insurance company was allowed to make a life and death decision  without ever seeing her and without knowing anything about eating disorders. That decision contributed to Anna’s death at age 21. I HAD to find a way to transform the horror of Anna’s death into something positive and I set out use Anna’s story and her voice to help some other person who was battling an ED. I never felt the stigma or shame that some people feel when a loved one suffers from a mental illness – I always understood that Anna did not have a behavior problem and the eating disorder was not a choice. She had a “real” illness that can be successfully treated if given the chance. 

2. What does your advocacy work consist of/ how do you define advocacy?  

I was one of the first members of the Eating Disorders Coalition and when I went to the first board meeting I talked about the importance of giving sufferers, family and friends a seat at the table. I have been involved in the EDC since, as past president and current board member. I have also been active in the past in the AED Patient Carer Task Force, the AED Advocacy Committee and other boards and organizations. I was on the Governors Mental Health Advisory Council in MN, the Mental Health Legislative Network, and I served as President of the Anna Westin Foundation and The Emily Program Foundation. Advocacy is standing up for what I believe in, using my voice to educate and effect change and being willing to honestly and openly tell my story as a way to empower and enlighten others. 

3. What change do you hope to affect? 

I believe that the eating disorder community can pass federal legislation that will address the multiple issues that we face including lack of public understanding and awareness, poor training of health care professionals, lack of access to treatment and not enough $$ for research. I think we can have an impact at both the State and Federal level and over time I think we can move towards greatly reducing the numbers of deaths due to eating disorders and the number of people who develop eating disorders in the first place. 

4. What are some of the challenges/frustrations inherent to this type of advocacy?  

Change can be a sloooooow process and it can be frustrating to show up year after year and have to fight the same battles. It is sometimes hard to compromise and accept less then what I think is ideal in order to get something done. An example was Mental Health Parity. The Mental health Parity and Addiction Equity Act of 2008 is a good bill but we had to leave out  parts that would have gone a long way to protect people struggling with eating disorders. In order to pass a MHP bill and not let it die completely we had to agree to a compromise so we could “live to see another day” and help craft other legislation that would fill in where MHP left off.    Having said that, being an advocate is a blast! I love empowering people to use their voices and encouraging others to join the fight. We do have successes and we are recognized as the leading eating disorders advocates in the country.

5.  Top 5 things you would share with a family facing a new diagnosis?

It can be difficult to know how to help your daughter or son who is struggling with disordered eating or an eating disorder. You may feel like you are going into foreign territory and worry that you won’t “do it right.” Eating disorders are serious, complex, and confusing and there are many myths and misconceptions about eating disorders that can make it difficult to know how to best address these illnesses. Eating disorders affect the body and the mind; they are not a choice or a behavior problem; and people who have eating disorders typically need specialized care to recover. Eating disorders affect approximately14 million Americans and they can affect anyone: male or female, young or old, any race, and people in all socio-economic levels. It is imperative for you as parents and/or caregivers to understand how important you are as a role model and, if your child has been diagnosed with an eating disorder, to your child’s recovery.  The following tips (5 do's and 5 dont's) may help you keep perspective and allow you to provide needed support to your daughter or son:

Do:

Do evaluate your personal beliefs and attitudes about health and weight:

Make an effort to focus on overall health, not weight and practice good health habits that focus on balance. Disordered eating and eating disorders can be triggered when the focus is on numbers, weight or calories.  Talk about the benefits of healthy behavior changes as opposed to weight loss. Commenting negatively or positively about weight can set people up for eating disorders and obesity in the future.  Be careful not to criticize your child’s weight or appearance. Instead, focus on what makes your child the unique and special person he or she is. Help your child define her or himself based on “who” they are, not “what” they look like.  Example: “Your eyes sparkle and your smile is amazing.” Or, “I love to watch you dance with such joy!”

Do model the behavior:

Advocate physical activity, balance and healthy eating habits because they feel good, give energy, and help to relieve stress. Encourage a variety of foods to get a variety of nutrients, but don’t villainize “junk foods” as off-limits. Make an effort to share family meals and invite your daughter or son to help shop and prepare the meal.

Do take it seriously:

If you suspect that your child is engaging in disordered eating or showing symptoms of an eating disorder make a plan to address your concerns. Eating disorders are serious illnesses. They are not an adolescent phase or a “fad.” They are “real” and affect all systems in the body.  Early signs can include such things as sudden and/or dramatic weight loss or weight gain, fixation on appearance, extreme dieting, changes in mood and behavior, or withdrawing from social activities. As with schizophrenia and diabetes, having an eating disorder is not a choice and treatment is available.

Do ask questions:

There is a simple yet reliable screening tool to help identify someone who may be struggling with an eating disorder. Ask yourself the following questions and if you answer “yes” to two or more it is time to talk with a professional. Early recognition and early treatment can be key to recovery.

1.     Does it seem like your child has lost control over how she/he eats?

2.     Does your child ever make him/herself sick because he/she feels uncomfortably full?

3.     Does your child believe she/he is fat, even when others say she/he is too thin?

4.     Does food or thoughts of food dominate your child’s life?

5.     Do thoughts about changing body or weight dominate your child’s life?

6.     Are shared meals difficult because of your child’s eating behavior and/or comments about food, eating, or body image?

7.     Are you or others worried about your child’s weight and/or eating?

Do maintain HOPE!

Recovery is possible. Effective treatment for eating disorders is available and people often fully recover and go on to live full, happy, and successful lives. Recovery takes time so prepare yourself for the journey by educating yourself about eating disorders and by practicing good self care.

Do not:

Do not avoid talking about your concerns:

It can be difficult to start the conversation. Many people with eating disorders are either resistant to treatment or in denial that there is a problem. Bringing up your concerns may be met with anger but know that ignoring the problem will not make it go away.  When talking with your daughter/son be sure to offer behavioral observations like “I notice that you avoid eating meals with the family” or “I can see evidence that you are hiding food in your room and this concerns me.”

Do not accept non-specialized care:

If you are concerned that your daughter or son may be struggling with an eating disorder seek out professionals who have training and experience in treating eating disorders.  The first step is a complete evaluation that includes physical, mental, and social components. Once the evaluation is complete, recommendations will be offered based on the results. There are several levels of care for people with eating disorders including outpatient care, intensive outpatient care, partial hospital care, hospital care and residential care.

Do not step away when treatment has begun:

Parents or caregivers should always be part of the treatment team.

It takes a team to recover from an eating disorder and families are an important part of the team. Families need to be involved with treatment planning and to be offered the support they need so they, in turn, can support their loved one.

Do not blame yourself:

There is no evidence that a particular parenting style leads to the development of an eating disorder. Eating disorders are complex illnesses and there are multiple contributing factors such as genetics; chemical imbalance; stressful life events; bullying; living in a culture that idealizes thinness; and personality characteristics.

Do not get stuck in asking “why”.

Asking “why” can get in the way of the more important question which is “how.”  How can I help? How can I model healthy behavior? How can I best support recovery? How can I better understand my role? How can I avoid getting distracted and stay on the recovery path?

 If your child has been diagnosed with an eating disorder it is important to address it as soon as possible. While it is true that eating disorders are serious illnesses, it is also true that your daughter or son can fully recover. Knowing how to talk with someone about eating disorders can be a challenge and some people will be afraid to do so because of shame, misunderstanding, or fear of discrimination. In your role as a parent or caregiver, it is important to educate yourself about disordered eating and eating disorders and then tackle the problem head on. If you address early signs of disordered eating and seek professional help if symptoms appear, the chances of a complete recovery are high.  If left untreated, an eating disorder can lead to a lifetime of suffering or premature death.

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Kitty Westin is the founder and former President of the Anna Westin Foundation which is now known as The Emily Program Foundation. The Anna Westin Foundation was started by Anna’s family after Anna died of anorexia in 2000. Kitty is on the board of The Emily Program Foundation, the Eating Disorders Coalition for Research, Policy & Action, and she is a former member of the Minnesota Governors Advisory Counsel on Mental Heath, the Minnesota Mental Health Legislative Network and numerous other boards and counsels.

Since Anna’s death Kitty has spoken to millions of people about eating disorders through personal appearances and the media. She has been invited to tell her story to a variety of groups in Minnesota and across the United States and the world. Kitty has been an outspoken advocate for people who struggle with eating disorders, their families and friends, and professionals who work in the field.

Kitty has received numerous awards for her advocacy efforts including the EDC Advocacy Award, the Redbook Mothers and Shakers Award, the AED Meehan/Hartley Leadership Award for Public Service and/or Advocacy, the Park Nicollet Community Service Award and the National Eating Disorders Association Inspiration Award.