Family & Friends Information Booklet

Hope’s Eating Disorders Support Office Hours: Monday-Friday 10am-5pm

Phone: 519-434-7721 Email: info@hopeseds.org

Website: www.hopeseds.org

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Table of Contents What is an Eating Disorder?………………………………………………………..3 - Anorexia Nervosa……………………………………………………….….4 - Bulimia Nervosa………………………………………………….…….…..5 - Binge Eating Disorder……………………………………………..….……6 - Other Specified Feeding or Eating Disorder (OSFED)………………….…7

Recognizing Signs and Symptoms of an Eating Disorder..….…………………..…8 - Who is Affected?…………………………………………………..……….8 - Contributing Factors……………………………………………………….9 - Psychological Factors………………………………………………..9 - Interpersonal Factors………………………………………………..9 - Biological Factors…………………………………………….…..….9

The Stages of Change…………………………………………………….………10

The Do’s and Don’ts of Being Supportive………………………………………..11 - Recommended Do’s………………………………………………………11 - Recommended Don’ts…………………………………….…………..…..11 - Things to Avoid..…………………………………………………..13

What to Say to Someone with an Eating Disorder………………………….…….14

Validation………………………………………………………………….………15

Invalidation………………………………………………………………………..16

Coping Strategies for Self-Care………………………………………………..….18

Frequently Asked Questions (FAQ)……………………………………….….……19

Online Resources…………………………………………………………….……21

Book Resources……………………………………………………………………22

Notes………………………………………………………………………………23

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What is an Eating Disorder? An eating disorder is a mental illness in which individuals experience disturbances in their eating behaviours and related thoughts and emotions Eating disorders are developed as a coping mechanism for deep and complex feelings of ineffectiveness, negative body image and low self-worth. They have many layers.

The symptoms of eating disorders can be devastating, robbing an individual of his or her physical and mental health, happiness in relationships, educational and employment opportunities and financial security. They affect not only the ones living with the eating disorder but also everyone around them including friends, family and caregivers.

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Anorexia Nervosa Anorexia nervosa is a type of disordered eating characterized by drastic weight loss from excessive dieting and an intense fear of gaining weight even when extremely thin.

Physical Signs and Symptoms - Weight loss - Dizziness or fainting - Sleep disturbances - Thin, brittle hair and nails - Discolouration of the finger and toe

nails (purplish tinge) - Cold and/or swollen hands and/or

feet

Lowered body temperature leading to complaints of always feeling cold

- Periods of hyperactivity - Fatigue - Dry skin - Lanugo – increased growth of fine,

downy body hair - Pale, anemic appearance

Behavioural Signs and Symptoms - Preoccupation with food and weight - Unusual, ritualistic eating habits (i.e.

eating only certain foods, - cutting food into small pieces, etc.) - Denial of any problems, specifically

weight or food related - Distorted body image (the inability

to see their true size) - Intense fear of weight gain - Perfectionism - Inability to concentrate - Memory loss or frequent lapses in

memory

- Compulsive exercise - Wearing baggy or layered clothing to

conceal thinness, and to stay warm - Withdrawal from others - Frequent weighing and/or

measuring of body - Inflexible in behaviour (specifically

regarding food; mealtimes, grocery lists, brands of food, etc.)

- Tendency to think in extremes (e.g. either I’m a success or I’m a failure)

- Low self-esteem and self-worth - Difficulty adapting to change

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Bulimia Nervosa Bulimia Nervosa is identified by recurrent episodes of binge-eating followed by purging (self-induced vomiting, laxative abuse, etc.) or other forms of compensatory behaviours (fasting, excessive exercise, etc.). Individuals feel a lack of control over eating and experience strong feelings of guilt and shame. An individual’s weight will often be in the normal range. Thus, Bulimia Nervosa may go unrecognized despite the resulting medical complications.

Physical Signs and Symptoms - Frequent weight fluctuations - Irregularities in menstrual cycle - Fatigue - Sleep disturbance - Bloodshot eyes, dark circles under eyes - Swollen glands, puffy face (particularly

the areas on the side under the chin near the throat)

- Frequent sore throats - Frequent bloating and abdominal pain

- Dizziness or fainting - Pale colouring - Sores inside the mouth - Rashes around the mouth - Callouses or cuts on the second and

third knuckles (primarily on the first two fingers)

- Increase in dental problems due to erosion of tooth enamel (teeth sensitivity, regular tooth aches, etc.)

Behavioural and Emotional Signs and Symptoms - Tends to alternate between periods of

dieting and/or restricting and binge eating

- Eats excessive amount of food but with little or no weight gain

- Fear of becoming fat or gaining weight - Low self-esteem – shame and guilt

associated with binging and purging - Highly critical of body size and/or

shape - Disappears after meals, evidence of

vomiting and/or laxative abuse

- Secretive eating and/or hoarding of food

- Mood swings, or dramatic/over exaggeration of moods

- Poor concentration - Memory loss or frequent lapse in

memory - Difficulty adapting to change - Frequent weighing or measuring of the

body - Tendency to think in extremes (i.e.

“Either I’m a success or I’m a failure.”)

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Binge Eating Disorder Binge eating disorder is characterized by frequent binge eating and feeling a lack of control over eating with no purging or compensatory behaviour. Those who binge- eat also suffer emotional distress and eat for emotional reasons (anger, anxiety, sadness, loneliness, etc.) rather than physical cues of hunger. They are usually above the average weight.

Physical Signs and Symptoms - Fatigue - Weight Gain

- Sleep Disturbances - Physical deterioration

Behavioural and Emotional Signs and Symptoms - Unable to satisfy hunger - Frequent snacking - Secretive eating and/or hoarding of

food - Mood swings - Loss of memory and/or memory

lapses - Rapid, out of control eating

- Emotional eating (eating to suppress unpleasant emotions i.e. anger, sadness, etc.)

- Low self-esteem and self-worth - Preoccupied with thoughts of diets

and food - Loss of interest in activities - Isolating self from usual activities

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Other Specified Feeding or Eating Disorder (OSFED)

If someone does not meet the clinical diagnostic criteria for Anorexia Nervosa, Bulimia Nervosa, or Binge Eating Disorder, but still has clinically significant disordered eating, they may be diagnosed with Other Specified Feeding or Eating Disorder (OSFED). Individuals normally fall into one of six groups:

1. Atypical anorexia nervosa (weight is not below normal)

2. Bulimia nervosa (with less frequent behaviors)

3. Binge-eating disorder (with less frequent occurrences)

4. Purging disorder (purging without binge eating)

5. Night eating syndrome (excessive nighttime food consumption)

6. Eating Disorders Not Otherwise Specified (EDNOS)

Signs and symptoms for OSFED are often similar to those you would expect to see from Anorexia Nervosa, Bulimia Nervosa, or Binge Eating Disorder. The constant concern regarding food, weight and body shape as well as behaviours used to restrict food intake and/or compensatory behaviours are seen as primary signs.

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Recognizing Signs and Symptoms of an Eating Disorder

When someone has an eating disorder, their weight becomes the prime focus of their life. This focus may revolve around how many calories or grams of fat each piece of food contains, exercise, and the number visible on the scale or measuring tape. Food often allows people living with an eating disorder to feel a sense of control. Their weight and preoccupation with food starts to interfere with activities they once enjoyed and they will begin to be fully consumed by their eating disorder.

Parents, family members, and friends should take warning signs seriously. One may start noticing changes in behaviour:

- Low self-esteem - Social withdrawal - Negative self-talk

- Fixating on food, calories, and fat - A need for perfection - Difficulty concentrating

Who is Affected? Anyone can be affected by an eating disorder. Eating Disorders see no age, gender, race, religion, or sexual orientation. Although females are more likely to develop an eating disorder, males do as well. There are categories where an individual may be at higher risk such as:

- Dancers - Gymnasts - Figure Skaters - Models - Wrestlers - Jockeys - Actors

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Contributing Factors There is no single cause of eating disorders. They generally result from a combination of factors that develop over time and are different for every individual. Eating disorders or disordered eating behaviours typically develop after a period of time where weight loss has occurred, either purposefully (a diet) or accidentally (the flu). This does not mean that everyone who goes on a diet develops an eating disorder; similarly, everyone who gets the flu doesn’t either. There must be contributing factors in place for a potential eating disorder to show.

Psychological Factors - Low self-esteem - Feelings of inadequacy or a lack of control - Poor body image - Problems coping with stress, depression, anger, and/ or loneliness based on weight or

size

Interpersonal Factors - Issues with family or personal relationships - History of being teased or ridiculed - Difficulty expressing emotions - History of physical or sexual abuse

Biologicals Factors - Those who have a genetic relative with a history or current eating disorder are at a

higher risk than those without

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The Stages of Change As a parent or friend of someone struggling with an eating disorder, you no doubt suffer right along with him/her. It is crucial for you to pay attention to your own needs as well as being present for your child or friend during their struggle. The Stages of Change is a cycle that you may go through more than one time while your loved one is in the process of recovering from or struggling with their eating disorder.

Pre-Contemplation • Do not be in denial of your loved one’s eating disorder • Be aware of the signs and symptoms • Avoid rationalizing his/her eating disordered behaviours • Openly share your thoughts and concerns with your loved one in a supportive way

Contemplation • Educate yourself about the disorder • Be a good listener • Do not try to “fix” the problem yourself • Seek your own encouragement from a local eating disorder support group or

professional

Preparation • Identify what your role is • Explore your own thoughts and beliefs about food, weight, shape and appearance • Ask your loved one what you can do to be more supportive

Action • Remove triggers from your environment that are specific to the need of your loved one • Be warm and caring, yet appropriate with boundaries, rules and guidelines • Reinforce positive changes without focusing on weight, shape or appearance

Maintenance • Applaud your loved one’s efforts and successes • Continue to adjust to new developments • Maintain positive communications • Be aware of possible backsliding

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The Do’s and Don’ts of Being Supportive

Recommended Do’s

• Educate yourself on eating disorders; learn the jargon, facts, and myths in regards to weight, nutrition and exercise

• Ask what you can do to help • Listen openly and reflectively • Be patient and non-judgemental • Talk with the individual in a kind way

when you are calm, not when you are upset or frustrated

• Have compassion, especially when they discuss painful issues or problems

• Let them know you only want what’s best for them, and that you are there to care and support them

• Be flexible and open about your support and the lengths you are willing to go

• Be honest

• Suggest professional help in a gentle way, and offer to go along

• Encourage all activities suggested by the care team, such as: keeping appointments, medicine compliance, meal plans, etc.

• Ask how they are feeling • Compliment the individuals personality,

successes and accomplishments that are not food or weight related

• Try and be a good role model, avoid diet/’healthy’ eating discussions in front of the individual

• Remember: Recovery takes time and food may always be a difficult issue.

• Remember: Recovery work is up to the affected individual

Recommended Don’ts

• Accuse or cause feelings of guilt • Invade their privacy, such as contacting

the patients doctor or others to check up on them

• Demand weight changes (even if clinically necessary for health)

• Insist the person eat every type of food at the table

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• Invite the person out for social events where the main focus is food

• Make eating, food, clothes or appearance the main focus of conversations

• Make promises or rules that you cannot or will not follow

• Threaten (e.g. If you do this one more time I will...)

• Create guilt or place blame on the individual

• Put a timeline on recovery • Try to change the persons attitude or

nag about food • Try to control the individual’s life • Use scare tactics to get the person to

comply or into treatment, BUT do call 9-1-1 if you believe person’s condition is potentially life- threatening

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Things to Avoid

Power Struggles: Power struggling over food can lead to resentment, anger, and hurt between family members or friends. The decisions made around food are their decisions. A better idea would be to support their positive eating habits and use encouragement rather than force.

“You” Statements: Avoid saying things like, “You need to eat,” “You need to change your behaviour,” etc. Instead, use “I” statements such as, “I’m concerned that you didn’t eat breakfast this morning,” or “I’m afraid when I hear you purging”.

Giving Simple Solutions: Giving a simple solution does not fix an eating disorder. An eating disorder becomes a lifestyle and needs to be changed, but is a long term process that cannot be done overnight. For example, “All you need to do is eat and everything will be fine”, will not fix the problem.

Focusing on size: Pointing out your loved one’s size will not help. When talking about their eating disorder, keep the emphasis on your concern for their health.

Demand weight changes: Even if clinically necessary, this is a choice they need to make for themselves. Forcing weight changes can exacerbate the problem.

Compliments surrounding the body: These can be traps. If your loved one asks how they look or are ‘fishing’ for compliments, avoid giving them; these can be twisted and used negatively. Instead of complimenting how healthy they look since they’ve gained weight, compliment them on their positive energy, or other changes you’ve noticed that aren’t physical. Having a discussion with your loved one about comments regarding their looks can help avoid these situations all together.

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What to Say to Someone with an Eating Disorder

It can be hard to determine what to say to someone you love who is struggling with an eating disorder because there is the fear of saying the wrong thing, triggering them or making it worse, which are common worries. There are approaches that can be very helpful. Validation of their feelings, even if we don’t understand what they are going through, is one key communication skill that makes your loved one feel heard. You can also say things like:

• “Can I stay and support you?” • “What will help? What won’t help you?”

Remember that what helps and doesn’t help can change daily, so ask, ask, and ask again as needed.

For more information on what you should and should not say to someone with an eating disorder, please visit these websites:

http://edrecoverystarfish.tumblr.com/whatnottosay http://www.wikihow.com/Speak-Supportively-to-Someone-With-an-Eating-Disorder https://www.nationaleatingdisorders.org/what-should-i-say http://www.adiosbarbie.com/2012/02/what-not-to-say-to-someone-with-an-eating- disorder/ http://www.huffingtonpost.com/maddie-ruud/post_3175_b_1380996.html http://www.eatingdisordersrecoverytoday.com/what-to-say-what-not-to-say-to-a- person-in-recovery-from-an-eating-disorder

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Validation What does validation mean? • To confirm, to verify, to authenticate. • Validation can be verbal or nonverbal

What are different types of validation?

1. Focus on listening and observing; staying aware; being in the moment Your mom is upset about her cat dying. While she is talking and crying, you are nodding your head and holding her hand to show her you are listening.

2. Focus on accurate reflection; restate what the person had said Your brother is upset about not getting a raise at work. He tells you he is furious and it looks like he has “steam” coming out of his ears. You say, “You are furious about this.” 3. Focus on observing and stating the unspoken; restate what the person’s non- verbal actions are Your sister is talking about how she does all the housework and her husband only spends 20 minutes a week cutting the grass. She tells you that her husband now wants her to cut the grass too. You say to your sister, “You’re thinking that this is unfair and unreasonable given everything you already do.” 4. Focus on causes of behaviours including past and present; restate issues from the past and connect them to the current issue Your friend was raised by alcoholic parents; she put up with constant lies and basically raised her siblings. When she got old enough and was dating, she said she would never put up with drinking in her immediate family. It has been 25 or so years now and she just found out her 17 year old was at a party, drinking. You say to her, “based on how you grew up with alcoholic parents, and all the pain that caused your family, it makes sense that you’d be angry that your son is now drinking.

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5. Focus on the person’s history and point out how their current response isn’t helpful; restate the past and connect it to the current issue and their choices Your friend was raised in a home with a physically violent parent. Your friend is in his forties and has never hit his children. He saw his fiancé threaten to hit his children. The scene brought back a lot of memories for him so he threatened to hurt his fiancé if the fiancé hits the children. You say to your friend, “Because others have treated you badly in the past. It makes sense that you’d be angry. The problem is that threatening to harm your fiancé will only strain that relationship, and it doesn’t really solve the issue – what about talking to your fiancé to explain why you’re so angry, and see if the two of you can find another way to deal with the kids?”

6. Focus on treating the person as an equal; hope for the person; genuinely believe the person is capable of change Your friend has been divorced for 3 years. He feels uncomfortable doing activities with other couples because he is the only single person in the group. You say, “It’s normal; most people feel this way, and we really want you there – you’re important to our group.”

Invalidation What is invalidation? • Dismisses behaviour independent of the actual validity of the behaviour • To weaken, to cancel, to reject, to dismiss

What are examples of invalidating responses? 1. Rejecting someone’s self-description – seeing it as inaccurate You just passed a difficult math test. You said that you feel like Einstein. Your dad says, “You’re no Einstein...you don’t know what you’re talking about.” 2. Rejecting a normal response Your child is really into watching your favourite show and he doesn’t want to stop to do

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his chores. Your wife comes home to see this and says, “He doesn’t want to do his chores because kids are just brats.” 3. Rejecting someone’s response to events – seeing their response as incorrect or ineffective Your child’s teacher yelled at her today. She tells her sister what happened, and her sister responds with, “That’s stupid to feel that way. She’s just a teacher.” 4. Dismiss or disregard Your beloved dog was just hit by a car. Your brother says, “Oh well, stuff happens.” 5. Directly criticize or punish You are at your grandpa’s birthday party. Grandma cut the cake and you are passing out slices of cake. You accidentally drop one of the plates. Grandma says, “You idiot. You don’t need birthday cake if you’re just going to throw it all over my floor.” 6. Rejection linking someone’s responses with social unacceptable characteristics You are helping your grandpa in the garage. One of the bigger tools just fell on your fingers. Your grandpa says, “Crying means you are weak. Suck it up.”

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Coping Strategies for Self-Care Take time for yourself. Remember that what you do is a much more powerful message than what you say. Being a good role model means taking care of your physical, emotional, and spiritual needs.

Seek support: From friends, family, and professionals whom you find to be helpful. Allow yourself to be cared for.

Remind yourself daily that you are doing the best you can. Keeping a journal can help. Writing down one positive affirmation a day can go a long way.

Find support in what others are saying. Join a local or online support group.

Say “no” when you can. Give yourself a break and don’t take any extra responsibilities on at this time.

Ask for help with the routine. Make a list of things you could use help with, such as: laundry, errands, yard work, housecleaning, and cooking. Allowing others to help makes them feel useful, but it also keeps you from becoming isolated and burnt out.

Explore your options. If you feel like you may need to take a leave from work temporarily, do it. Doing what is in your best interest will ensure you are healthy and happy enough to provide the best support possible.

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Frequently Asked Questions (FAQs) What causes an eating disorder? There is no one single cause for eating disorders. Most develop as a result of multiple factors, psychological, interpersonal and biological factors all contribute to the development of an eating disorder.

How is “feeling out of control” defined? The majority of people who struggle with binge-eating say they feel out of control during a binge. Feeling out of control means feeling as though you cannot stop eating, despite feeling increasingly uncomfortable, not physically hungry, or both.

Can you fully recover from an eating disorder? In short, yes! However, recovery has an individual meaning for each person so it is difficult to generalize and give a specific definition of ‘full recovery’. Depending on things such as the length of time the individual has had the eating disorder, the quality of support they receive, etc. will influence the length of time the recovery process takes.

What are the chances of recovery? • Approximately half of those with Anorexia or Bulimia fully recover • Approximately 30% have a partial recovery • Approximately 20% experience no substantial improvement in symptoms

Can an individual recover without professional help? Every individual case is different and each person should be treated that way. Some feel that they don’t need professional help and rely on family, friends, or self to get through it. Others absolutely need the professional help in order to change what they eat and how they eat. Often, general practitioners, dieticians, nutritionists, therapists, and other professionals need to be involved to give the person the best chance at recovery.

Are all services at Hope’s Eating Disorders Support completely confidential? Hope’s Eating Disorders Support guarantees confidentiality unless a person discloses harm to self, harm to others, or instances in which children have been in danger or could

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be at risk. We have a legal obligation to report any of these things to authorities.

How Hope’s Eating Disorders Support can help? Hope’s Eating Disorders Support exists to help those who may be experiencing disordered eating or an eating disorder. Although Hope’s Eating Disorders Support does not offer any clinical services, we do offer support and education free of cost. We have a friendly, welcoming, non-judgemental environment that ensures confidentiality. Hope’s Eating Disorders Support offers support groups for individuals, education for friends and family, and a comprehensive referral directory of professional and additional resources in the community.

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Online Resources Hope’s Eating Disorder Support www.hopesgarden.org

National Eating Disorder Information Centre (NEDIC) Toronto based resources and information on eating disorders. http://www.nedic.ca/

Sheena’s Place A registered charity offering hope and support services at no cost to people affected by eating disorders and their families. It is located in Toronto. www.sheenasplace.org

Bulimia and Anorexia Nervosa Association (BANA) An organization providing specialized treatment, education and support for individuals with eating disorders.www.bana.ca

National Eating Disorders Association Non-profit eating disorders organization www.nationaleatingdisorders.org

What’s Eating You? Dedicated to providing accurate information about the prevention and treatment of eating disorders. www.whatseatingyou.com

Mirror-Mirror Eating disorder information and links www.mirror-mirror.org

About-Face Information on media messages that affect self-esteem and body image www.about-face.org

F.E.A.S.T An online support for carers www.feast-ed.org

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Book Resources Brave Girl Eating Author: Harriet Brown

Your Dieting Daughter Author: Carolyn Costin

Father Hunger Author: Margo Maine

Surviving an Eating Disorder: Strategies for Family and Friends Author: Michele Siegel

The Parent’s Guide to Eating Disorders: What Parents Need to Know Author: Jane Smith

Skill-Based Learning for Caring for a Loved One with an Eating Disorder Author: Janet Treasure

Life Without Ed Author: Jenni Schaefer

Goodbye Ed, Hello Me Author: Jenni Schaefer

The Relaxation and Stress Reduction Workbook Author: Martha Davis

Hope, Help & Healing for Eating Disorders Author: Gregory L. Jantz

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