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15 Things To Remember When You Love A Person With an Eating Disorder

I met my friend, “Maria,” (not her real name) in high school.  She was beautiful, sweet, and I enjoyed spending time with her.  One time the I didn’t see Maria, however, was at lunch time.  She was very thin, and I always suspected that food was an issue for her.

My suspicions were confirmed when Maria disappeared for three months, to enter an inpatient program at the hospital.  She was diagnosed with anorexia nervosa and felt very awkward about returning to school once she was discharged.

When she came back, she was still the same Maria that I had enjoyed spending time with.  But there were some things that we both had to learn.  I learned–through trial and error–how to be a good friend to someone with an eating disorder, and how to help Maria through her recovery.

Supporting someone with an eating disorder can be challenging, but it can make a huge difference in your loved one’s recovery.  Here are some things to remember if you love a person with an eating disorder:

1.  They may not be underweight.

According to this article in the Natural News, clinicians are beginning to notice a new eating disorder, called orthorexia, which is an obsession with eating the “right” foods.  People with orthorexia do not necessarily eat less, so they may be a healthy weight or even overweight.  So be understanding if a loved one has been diagnosed with an eating disorder, and do not assume that they are not telling the truth about their diagnosis, just because they are not underweight.

Maria said that the worst thing for her was when people would tell her that there was no way she had anorexia, because she was not that thin.  This was when she was in recovery.  She was gaining the weight back, but she still had a number of issues to work through.  The weight comes back first, but there is still a lot for the person to work through once they have started gaining weight.

2.  They tend to avoid gatherings that center around food.

According to this article in NY Mag, people with eating disorders tend to show up to parties after the meal has been served, claiming that they have already eaten.  They may also suggest outings that do not involve food.  This is because eating is stressful for them, even if they are in recovery.  You can help by suggesting activities that do not involve food.  People with eating disorders tend to isolate themselves, and providing an opportunity to socialize without the focus being on food can be quite helpful.

Maria avoided lunch for most of the time I knew her.  Even when she was in recovery, she preferred to eat in a teacher’s classroom.  I was respectful of this, and found a lot of fun, food-free activities for us to do after school.

3.  They may be very sensitive to comments about their appearance.

The National Association of Anorexia and Associated Disorders (ANAD) states that even well-intended compliments, such as, “You look really healthy now,” may be misinterpreted as meaning “you look fat.”  People with eating disorders are very self-conscious about their physical appearance, and many times when someone looks recovered, they still have a lot of recovery work to do.

Maria found it very triggering when people told her she didn’t “look” anorexic.  She said that she often felt competitive with other people who had eating disorders, trying to be the “best” anorexic.  These comments triggered those patterns of thinking and weren’t helpful to Maria in her recovery.

4.  They don’t need you to be a therapist.

ANAD cautions friends of people with eating disorders not to try and be that person’s therapist.  If your loved one has been diagnosed, they are likely working with a team of professionals to help them recover.  Your job is to be a caring friend.  Be supportive, but understand that your role is not to “solve” their problems.

This was something I learned through trial and error with Maria.  It wasn’t my job to make sure she ate enough.  We had an argument once, because I was asking her how much she was eating.  My job was to be her friend, as I had always been.

5.  They want you to know it’s about more than just food.

According to ANAD, eating disorders are about much more than just food, so telling your loved one to “just eat” is not going to solve the underlying issues.  There are many complex issues involved in eating disorders, and recovery can be a time-consuming process.  Be there for your friend, and be supportive and understanding.  Ask your friend how their day is going, and how they are feeling.  Don’t keep the conversation limited to food and eating.

This is why being Maria’s friend was so helpful.  While our interactions were not centered on food, Maria did confide in me about a lot of her fears and doubts.  Being able to have someone with a sympathetic ear there to listen to her helped her tremendously.

6.  They may feel ashamed of their condition.

An article by Caltech states that people with eating disorders are often ashamed.  This can lead them to be very defensive about their eating and find conversations about food consumption to be very upsetting.  Understand this, and understand that they are working with professional to help them with their diet.  The role they need you to play is that of a supportive friend.

Coming home from the hospital was very awkward for Maria.  She was embarrassed that she had lacked to “willpower” to keep her condition under control. She was worried that seeking professional help meant she was “weak.”  Of course none of these were true.  Eating disorders are not about willpower, and it takes a great deal of strength and courage to seek help professionally.

7.  They will experience good days and bad days.

According to an article by NHS, recovery is a long and bumpy process.  Part of your loved one wants to get better, while another part is afraid to let go of the old habits.  Understand that not every day will be easy, and does not mean that your friend is not getting better or that they are backsliding.  Be there for them through the ups and downs.

This was something that surprised me with Maria.  Some days, she would seem very confident and even eat lunch with me.  Then the next day, she would be absent from school because she felt so challenged.  Recovery is a roller coaster, and being there for her and the good and bad days was very important.

8.  They may at times come across as angry or aggressive.

NHS states that this is because people with eating disorders are often fearful and insecure.  Learning to cope with and redefine these fears is a part of recovery, so be patient with your loved one.  Understand that it is not about you, and take care not to take it personally.

Maria would sometimes become angry and lash out at me for no reason at all.  Learning not to take this personally was an important lesson, and it helped me to be there for her when she calmed down and felt embarrassed about her outburst.

9.  They still want to be included.

According to the Butterfly Foundation, people with eating disorders may feel isolated and alone.  Even if they try to isolate themselves, continue to invite them to participate in the activities that they used to enjoy with you.  This can help them a great deal in their recovery.  Invite them, but don’t push it if they say “no.”  Just keep inviting.

Anytime I went out with friends on the weekend, I invited Maria.  Sometimes she came, and sometimes she did not.  But later on she said that always being a part of the group and always having a place where she belonged was very helpful.

10.  They need you to set boundaries for yourself.

The Butterfly Foundation states that it is necessary for you to set the boundaries, as far as being supportive of your friend.  It is not possible for you to be on call 24/7, but when someone is lonely and struggling, it can be hard–if not impossible–for them to realize this.  It is not only perfectly fine for you to set boundaries for when and how long you are available, it is also helpful to your friend in the long run.  By taking care of yourself, you will be more able to be patient and understanding of your loved one.

11.  They likely learned their habits as children.

According to Eating Disorders Online, children are especially at risk.  One study conducted by the Agency for Healthcare Research and Quality found that hospitalizations for eating disorders in children under 12 increased 119 percent between 1999 and 2006.

My friend Maria went on her first diet at age 10, and had her first hospitalization at age 16. She said a lot of her misunderstandings were learned in childhood.

12.  They want you to know that men can have eating disorders as well.

According to Eating Disorders Online, 20% of women and 10% of men will have an eating disorder in their lifetime.  That means 1/3 of eating disorder sufferers are male.

Maria did meat a surprising number of men while in treatment, and she said they encountered a great deal of misunderstanding, because they were not skinny women.

13.  They want you you to know that eating disorders kill.

Eating Disorders Online states that one in five people diagnosed with anorexia will die from the disorder.  People with anorexia are 50% more likely to die by suicide than people without the condition.

Maria said that she did think of suicide, but she sought help right away.  This is not always the case though.  If your loved one seems depressed or talks about ending their own life, seek professional help immediately.

14.  They want you to know that there is not a lot of funding for treatment.

According to Eating Disorders Online, the government allocates 93 cents in research funding per eating disorder patient, while the average autistic person is designated $88.  So while it is getting more expensive to hospitalize an eating disorder patient, the money to pay for it is not there.

The important thing to remember from this is that your loved one might not be fully recovered when they are released from treatment.  There is a great deal of red tape, and they will need your support as they work their way through it.

15.  They want you to know that most people don’t get treatment.

Eating Disorders Online states that only one in ten people with eating disorders get treatment, due to insurance issues.  This is because eating disorders are hard to diagnose but also because healthcare laws largely consider eating disorder coverage to be non-essential.

Maria was lucky in this respect, but she knows that things would not have gone so well for her, had her family not had adequate insurance coverage.

Maria is now a healthy woman in her 30’s, happily married and the mother of two beautiful children.  She emphasizes that recovery is possible and that most people with eating disorders do eventually get better.

Eating disorders are challenging and often misunderstood.  By better understanding your loved one’s struggles and challenges, you will be a much-appreciated source of support for them in their recovery!

 

Inside The Hidden World Of Adult Eating Disorders

 

Toni Saiber was going through a divorce when her soon-to-be ex-husband made a passing comment about her weight.

The jab stung and reverberated in her head: She was 30, about to be back out on the dating market, and felt particularly vulnerable. She wasn’t overweight, she knew that, but there was certainly room for improvement. Saiber, a successful interior designer in Denver, liked things to be perfect.

Once she stopped eating much of anything after 4 p.m. — a tip from the diet program she enrolled in — the first 10 pounds fell off. She was good at achieving tasks she set out for herself, and restricting her food intake was no exception.

But at some point, during the calorie counting, meticulous planning and obsessing about the food she was and wasn’t going to allow herself to eat that day, something clicked. Soon, it wasn’t enough to weigh herself once a day. She was compelled to check in the morning and in the afternoon and before bed.

“If I didn’t gain anything or better yet, lost even an eighth of a pound, I would be in a great mood,” Saiber said in a recent interview with The Huffington Post. “If I gained, I would be very irritable.” She didn’t trust her bathroom scale to be accurate, so she went out and bought a medical-grade doctor’s scale. And so began her over two-decade-long struggle with anorexia.

Eating disorders are typically ascribed to the young: in particular, female teenagers. But experts say that portrayal is inaccurate. Adults develop eating disorders too, some much later in life. Because of the lingering stereotypes about who gets sick, they can face lower rates of diagnosis, unique medical complications and limited treatment options, as well as the stigma that comes with having a disease associated with teens.

Cynthia Bulik, the director of an eating disorders program at the University of North Carolina, said that when their program launched in 2003, she expected to see mostly adolescents.

But within five years of opening, almost half their patients were over the age of 30. “This has been mirrored across the country,” she said. “We are seeing both women and men in midlife and beyond who are presenting for treatment.”

Curious about what she was seeing in the clinic, Bulik began to do some research. In 2012, she published a study, which found that 13 percent of women aged 50 and older exhibited symptoms of eating disorders.

From a medical perspective, that’s a serious concern.

Bulik explained that older patients can have more severe medical complications, including issues of the heart, reproductive system and teeth, simply because their bodies are less robust.

“Pretty much every system is being affected,” she said.

Triggers in the body

Margo Maine, a clinical psychologist who treats patients at her practice in West Hartford, Connecticut, said adults with eating disorders typically fall into three categories: those who have struggled with disordered eating since adolescence, but don’t develop a full-blown eating disorder until later in adulthood, those who may have successfully been treated for an eating disorder as a kid but relapse as an adult, and those, like Saiber, who develop eating issues for the first time as an older person.

“We’ve paid too much attention to the challenges of young people when it comes to body image, and managing self-esteem and a healthy relationship to food, and we’ve really ignored what happens as women get older,” Maine said. “Later adulthood is a ripe time for an eating disorder to develop.”

Times of big biological change, such as a pregnancy or menopause, put women at heightened risk, she explained. The natural signs of aging, like wrinkles, reduced muscle tone, gray hair and added weight around the midsection may be especially troubling to some people.

Later adulthood is a ripe time for an eating disorder to develop.Margo Maine, clinical psychologist

Developmental life events, which raise questions about one’s identity, such as divorce, as in Saiber’s situation, retirement or even becoming a grandparent, can also serve as triggers.

“When we are questioning our identity as women, a big part of that is our weight and body image,” she said. “Weight loss or controlling our bodies in some way might become a real focus during those transitions, without us even knowing we are turning toward it because of stress.”

No one asks, no one knows

Experts say one of the biggest issues in adult eating disorders is low rates of identification. Saiber, who is 5 feet 7 inches tall and weighed less 95 pounds for two decades, experienced that very phenomenon.

She said that throughout her struggle with anorexia, not a single medical professional asked her about her low weight or whether or not she had an eating disorder.

There was certainly opportunity. She had annual check ups with her OBGYN, who never said a word. Then there was the surgeon who operated on her after she broke two bones in a gentle fall while skiing. The surgeon said her bones were unusually soft for her age, and recommended she get a bone density scan, but didn’t mention her weight.

The misconception that eating disorders only happen in adolescence has done a huge disservice to detection and treatment of people in midlife.Cynthia Bulik, eating disorder specialist

“I don’t think it’s because they don’t care. I think they care very much,” Saiber said, reflecting on why her doctors never talked to her about her weight. “I just think they’ve never been educated. They don’t know how to broach it and they don’t want to do more harm than good.”

Bulik said Saiber’s experience is relatively common.

“The misconception that eating disorders only happen in adolescence has done a huge disservice to detection and treatment of people in midlife,” Bulik said. “I’ve had situations where older women and older men tell me they’ve gone to their primary care provider and said ‘I think I have anorexia or bulimia’, and their physician has said, ‘You can’t have that, that’s a kid disease.'”

Maine points to another factor: The war on obesity.

“Everybody, even very knowledgeable health care professionals think that being thin is really important and weight loss is very important,” she said. “Doctors will say, I just don’t want you to gain weight. I just don’t want you to gain weight, when in fact, weight is a much more complex story for all of us.”

She recounted a story of one patient who was suffering from bulimia and lost 20 pounds over a year. The woman finally worked up the courage to tell her OBGYN so she could get help. But before she got the chance, her doctor began the appointment by commenting on her weight loss and then asking her how her husband was enjoying her new body.

Leslie Sim, the clinical director of the Mayo Eating Disorders program, said that primary care physicians are in a unique position to identify eating disorders, but often don’t.

“Providers might be uncomfortable asking about eating disorders for fear that it might offend someone, or assume that people are reluctant to talk about their eating,” she said. “It’s not on a lot of people’s radar, and unfortunately they tend to look for other medical reasons for unexplained weight loss.”

Letting go of the secret

Saiber kept her eating disorder to herself for almost 20 years. She remarried in 1987, but she never told her husband about her anorexia.

“Of course, there was so much shame, I would never have shared it with him,” she said. “I kept it secret from everyone.”

They tried to have a baby when she was 37, which was difficult as her periods were irregular. After seeking out fertility experts, Saiber finally got pregnant but miscarried at nine weeks, which she accounts to her low weight.

It wasn’t until 15 years later, when she was 52, that she was no longer able to keep up the exhausting ruse.

I realized not only was I very close to death, but I was hurting the people I loved the most.Toni Saiber

Suffering from what she thought was a stubborn cold, Saiber was eventually admitted to the hospital, where she fell into a coma for eight days. She was in such a state of malnutrition that hospital staff commented that they had only witnessed her condition in third world countries.

Seeing her family and friends standing vigil by her hospital bed was her turning point, Saiber said.

“An eating disorder is such an introverted, inward illness. It was this wall between me and everyone,” she said. “I realized not only was I very close to death, but I was hurting the people I loved the most.”

After she stabilized, Saiber had to travel out of state to Iowa City for treatment, as Denver did not have an inpatient unit for eating disorder patients over the age of 21.

It’s been almost 13 years since her lowest point, and Saiber is grateful to be alive. She helps run The Eating Disorder Foundation, a nonprofit in Denver that provides support services for people suffering from eating disorders and their families. She tells her story to convince others it is possible — and worth it — to get better.

“An eating disorder takes up almost all your time and all your energy, from the moment you wake up until the moment you go to sleep,” she said. “When your eating disorder behaviors are no longer there, it allows for all of this other stuff to come into your life.”

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