Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life

Pam Dillard

LaJolla, California, USA

As I look back on our experience and ask “what would I like to have seen play out differently", it would be the following:

1.  I wish we didn’t have to go through that shock and awe of struggling with what it means that our son had an eating disorder.  When I was reading about the disease initially, pretty much everything I could get my hands on was related to girls and women.  The ED looked so different on our son.   He did not throw any tantrums, he didn’t have melt downs at dinner, there was no food flying in the kitchen.  There was only quiet compliance on the surface while the lies worked craftily to allow his ED to completely take control of him.  

2.  I wish I understood immediately how VITAL the right treatment team is for recovery. 

3.  I wish I understood how helpful medications could be to quiet his anxiety.

4.  I wish teachers and nurses had more of a working knowledge about EDs. 

5.  I wish we didn’t have the constant stress of “will my insurance company” allow another “X” amount of time in treatment?  I was appalled at one point when we were denied coverage for IOP therapy.  At that point in time, we had incurred approximately hundreds of thousands of medical bills for medical treatment.  I was astonished our insurance company could be so short sited about ongoing IOP and further the Medical Director doing the review had no experience with EDs. 

6.  Most importantly, I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life.  Once we understood this, that knowledge truly helped me and my husband sort through the lies and see how severely and savagely this disease attacked our son.

April 10, 2015

Today marks one year since our son was discharged from the Eating Recovery Center in CO.   He has shown so much progress since that day; maintaining a healthy weight, making friends, adjusting to a new school, and has become genuinely a happy kid!  Our lives for the three years prior were filled with chaos, heartbreak, pain, anguish and doubt.  It included doubt that our “new normal” would ever look like anything outside of helping our son survive.  Doubt that the poor decisions made in the process of trying to help him wouldn’t be erased.  Doubt that he would ever make it.  

Our son was diagnosed with an eating disorder when he was 13.  We had noticed some differences in him in the months prior - extreme rigidity about food, wearing multiple layers of clothing, isolating, negative attitude about sports.  We were fortunate that his pediatrician saw the symptoms and immediately referred him to the UCSD Eating Disorders Treatment Center in La Jolla. It was there that we found he had an eating disorder, and also was so depleted he had to be admitted to the hospital  His resting heart rate was in the 20s.  We were shocked.

We had never heard of anorexia affecting men or boys, or that people are genetically predisposed to it.  We also realized during our first hospitalization that not only did I have an aunt who suffered from the disease, but also a male cousin. And the questions about our parenting and whether we could have caught this sooner loomed.  Of course, we could have caught it sooner, we saw the signs, but we didn’t nonetheless.

That was the first of five hospitalizations over the course of 2 1/2 years.  It was during his last hospitalization that we were instructed to have him admitted to a residential facility.  In fact, we were not permitted to even take him home. Our son’s ED had shown so much determination, and manifested itself in so many ways, that the family based treatment we’d been embracing was no longer enough.  My husband and I are forever grateful for that push. 

I’m convinced that even though our journey has been painful, exhausting, and frustrating, we are fortunate on so many levels.  We have the luxury of living within driving distance of a world class eating disorders treatment facility (UCSD); we have a Children’s hospital (Rady Children’s Hospital) with an entire wing dedicated to treating young people with this disease.  We have therapists who have experience with eating disorders, Family based treatment, DBT, and we had people around us who wanted to see our son live.  

Even though those professionals were able to help us help our son, society still does not recognize freely that this insidious disease affects men and boys.  Some of the feedback we heard from people around us included:

“What do you mean, you have an eating disorder?  That’s a girl disease!”  “Are you gay?”

It wasn’t insulting enough that our son was labelled “anorexic”, but somehow his disease drew an immediate conclusion regarding his sexuality!  Our society doesn’t have the experience or knowledge that eating disorders are agnostic regarding the gender of its victims!  It was nonetheless heartbreaking.   And it catapulted us into a period of extreme privacy because of the shame we drew from those reactions.  

There is no shame!  We need to be able to speak about this, educate people, understand the struggles of a male with an ED may look different, but they are just as severe and potentially fatal.

The author is Pamela Dillard,  La Jolla, CA  US, Mom and a Sales Director at an insurance company

Dear ICED: My daughter just disappeared into herself

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Dear ICED:  My daughter just disappeared into herself
By: Kim
NSW, Australia

My daughter started down the path to anorexia nervosa sometime mid-late 2009. I can say that now with hindsight and being able to recognize the symptoms. Compulsive, obsessive, perfectionism, almost hysterical outbreaks if something didn’t suit her, no desserts.  Something building but not showing itself in any real external way. You could have labelled it teenager behavior, highly strung or overly sensitive. She was 14, turning 15 in December of 2009, she is now 20.

At the beginning of 2010 she started to make changes to her diet. This is what first alerted me that something wasn’t right. We already ate healthy and ate as a family. She wanted to eat healthier, questioned what was in each food, refused all ‘junk’ foods. There was a pattern of foods questioned for health purposes suddenly disappearing off her diet even if the food was a ‘good one’. At first she was relatively calm, but as weeks progressed she would react over-the-top if any of the ‘forbidden’ foods were offered.

I first put her on the scales at home mid March and she had lost, but not a huge loss, not something to really worry about. But the intensity and difference in her was more than enough to say something was different.

By the end of April, she stepped up the process. All carbohydrates, fried food and sugar were now not allowed. Lunches were now only a yoghurt and fruit. Her weight by the end of April was now down more. I was now pushing her to eat, trying to break through what was going on. She was getting depressed, had outbursts of anger, and if angry refused to eat. It was like my daughter was disappearing into another parallel. She was physically present, sometimes seemingly herself, functioned at school and at home, but mentally and emotionally lived in another world.

Mid May she let slip her last period was in March. Her food portions were slowly getting smaller. The June long weekend was the crunch point. She was very down, ate very slowly and little. We were in the doctor surgery on the Tuesday afternoon. Her depressive state was also a concern. Thankfully the doctor scheduled weekly visits, I am very grateful he didn’t write Sophie off as a ‘teenage thing’. His notes prove he diagnosed Anorexia then.

June was mainly keeping Sophie busy on weekends as she was very depressed, enough to be suicidal. We had the doctor’s clinic emergency phone number on speed dial. She was angry, aggressive, unapproachable. Other times she would just cry and sob in your arms. She was totally lost. Her eating patterns become more rigid, portions smaller, there was real fear in her eyes and actions when ‘bad’ foods were given to her. And she just couldn’t eat them, was unable to even try. She would collapse into tears. Her weight plateaued underweight for a bit, then began the slide down that couldn’t be stopped. We had a counsellor for a while, but after a month she gave up. Said she didn’t know what to do and couldn’t reach Sophie. We were given a referral to a child psychiatrist but her appointments were so booked, we couldn’t get one until September. The doctor was the only lifeline we had in trying to save Sophie.

In July we went away for two weeks (with emergency plans in place), it was the worst holiday we ever had. Breakfast and lunch were now apples, dinner was a small serve of what we had, with a major amount of coaxing to eat. She didn’t drink anything except a glass of milk. She was very cold all the time, was slightly yellow, painfully thin. Her breath was sour, old people kind of smell. Her hair was beginning to fall out. When we got back she stopped eating completely. A glass of milk a day was all she was having. And we still could not admit her to hospital, as she was not the required low weight to do so. Her medical obs of blood pressure, temp and heart rate were also not low enough for admittance. Trying to force her to eat, and be the food police just didn’t work. Sophie refused to eat, refused to do anything. She would sit so close to the fire to keep warm. She now had the fine hair covering on several parts of her body. She smelt, a decaying, old horrible smell. It was so confronting. I used to be terrified to go up in the mornings to wake her, in case she was no longer with us. When sitting at the table with us, she would just lie her head down on her arms and just lie there. There wasn’t enough energy or interest to do anything more. But still she kept up her schooling with an intensive obsession.

In August, my daughter just disappeared into herself. No emotion, no fear, no anger, just a bare existence. Didn’t talk to anyone. She must have been in a lot of physical pain too but nothing registered across her face or emotions. Finally in mid August her medical obs failed. Her weight, temp and heart rate were low enough to cause her harm, and her blood pressure was dropping significantly. Finally we could get into hospital to save her. She barely raised a whimper when she was taken for admission. She seemed to be more content to go into hospital despite what that may bring, rather than she or us trying to save her. Her weight was now about significantly underweight, her temp was down to almost 35 and her heart rate in the daytime was in the low 40’s. In hospital we discover her night heart rate was getting down to 38 or lower. There were no beds in ICU so the children’s ward monitored her in their intensive care bed, pumped her with electrolytes, potassium, fluid, and didn’t give her a choice of eating by mouth, it was too late. Sophie was given a NG feed and a list of rules to abide by so she wouldn’t use any energy she didn’t need to.

For the next 8 weeks this where she stayed. The hospital experience didn’t heal the anorexia, it didn’t make her decide to recover. It just saved her medically. She collected a team to work with her once she left hospital. The anorexia changed and adapted to the new circumstances. It developed a rigid diet that Sophie would only eat for the next year. It developed new coping patterns, become physically and verbally aggressive. It controlled Sophie entirely, barely let my daughter come out and be seen. We had a brief month after hospital when Sophie was happy and seemed to be on the mend. Then the anorexia took over and buried her again. In 6 months she was back in hospital for another 9 weeks. And after 4 months back in hospital again for another week. This was her turning point, when she decided enough was enough and it was time to fight back. In her own words, it was like living in a horrible nightmare and she did not want to keep living that anymore.

From a treatment point of view, we used a very broken down form of the Maudsley Approach. FBT didn’t work great for our family dynamics and Sophie could not move from her safe foods. She ate the amount given, very very occasionally tried a new food but that was as far as we could get her. I prepared all foods and kept her out of the kitchen. After the 3 hospital admission, this is when she finally decided to widen her diet. It took a couple of years though to slowly introduce new foods and get her to be able to eat them regularly. Now she can intuitively eat or be flexible in her eating habits. It takes getting to full recovery to achieve this step though.

She had a team of five that were her support/medical team outside of hospital. It was after second admission that this team with the new dietitian really began to strongly hold Sophie and support her. She learned that they would not let her fall and would follow her to the end to keep her safe. We had a paediatrician, GP, psychiatrist, psychologist and dietitian. Each one as important as the other and all working together and in constant contact. The psychiatrist was the over arching lead.

From a family point of view, we all lived and had anorexia too. It is never just the person who has the illness that suffers. You all do. Our job was to get her to treatment, support her and to learn how the environment around Sophie was affecting her and what needed to change. We had to learn ourselves how to survive the stresses (hell) of the eating disorder, how to relate to it and to work against it. We had to treat our daughter on the front-line of combat to keep her safe and alive, until she was ready and able to take over the task herself and to always, always stay alert. It is still a learning curve, each phase of recovery requires new knowledge and understanding of just how an eating disorder lives, breathes and constantly re-adapts itself so it can survive.

It took her 5.5 years from start to finish to be pronounced fully recovered. The hope is this that recovery is real and attainable. But it’s not easy and treatment and support matter a great deal in this journey. Early diagnosis and intervention are critical, sticking with therapy long after weight is gained, being aware and putting in safe guards around daily life and routines are all key points for success. Learning what other comorbids and illness you may have also affect the journey to recover and how to stay recovered. Anxiety, OCD, depression, along with high functioning aspergers are my daughter’s lot in life. Learning to manage these successfully means slipping back into anorexia is avoided.

One day I hope my daughter will talk about it and understand what led her there and why. For now she is still blocking that part and doesn’t want to share her journey with anyone. It is still too raw, too frightening, too close.

Dear ICED: Dying, Waiting in Ontario

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Dying, Waiting in Ontario

Suze Nelson

Peterborough, Ontario, Canada

We live in Ontario, Canada, where much to our shock when my daughter was diagnosed with AN at 19, we quickly learned that our provincial health care would not cover treatment costs, unless of course she was DYING in hospital. Canada falsely prides itself on universal health care; no such healthcare exists for eating disorders. ED treatment here is 100% two-tiered – if you have funds, you can receive treatment. If not, tough luck. Your child dies.

Disgusted and enraged doesn`t begin to cover my feelings on this. We were absolutely panicked and terrified that she would not survive due to our lack of finances. 

We immediately launched a successful fundraising campaign drawing media attention and support worldwide. This allowed us to finally start the application process by getting her name on the waiting list at a well known ED treatment facility here in Ontario. Between diagnosis and admission several very scary months went by. Let me be clear - the success of our fundraising campaign campaign was the ONLY REASON SHE RECEIVED TREATMENT.  Sufferers in Ontario DIE WAITING for treatment.

My daughter completed one full 12 week inpatient program at this centre and was then discharged to live on her own, having no aftercare or followup plan in place. She relapsed soon after discharge and was readmitted for another round. Again, no aftercare or follow up upon release. One year later, a major relapse and a five month inpatient program at same centre. This time my daughter created her own supports and plan for discharge.

At no time during these three admissions over 2 years at this treatment facility was our family welcomed, educated or included in my daughter`s treatment or recovery plan, let alone informed of her medical condition. As a family we have had no DBT, no FBT but one hell of a lot of BS and WTF.  Current research demonstrates that family involvement and support is a key element to sustained recovery.

My girl is now 24, fighting for full recovery, living with best friend and her cat. 

Suze Nelson is a single mum of three strong and beautiful children and a tenacious EDucator/activist living in Peterborough, Ontario 

Dear ICED: "We need change NOW"

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Jen’s experience

East Sussex, UK

My daughter was diagnosed with Anorexia Nervosa in March 2007. She was just 14. Turns out she also had depression, which to my shame I hadn’t realised. We’d moved home the previous year as her dad and I had split up; I’d moved closer to work and my family. It made sense to move, but it meant that she and her younger brother had to change schools. I knew her brother would be fine, but my daughter was always anxious as a child and found the change hard. Now I know that anxiety and hyper-sensitivity can be a sign of being predisposed to an eating disorder (ED). To my knowledge, no-one in my family ever had an ED.

We were referred to CAMHS (Child & Adolescent Mental Health Services) and were seen within a few weeks. We were asked about diet, family dynamics, recent events etc. I was told to feed her three meals and three snacks a day. But these professionals didn’t have the resources or the knowledge to tell me how to re-feed my daughter. Mealtimes were a battleground. If only I knew then what I know now, nine years later. At one stage they sent a nurse round to help, but all she did was get cross with my daughter and told her she was ungrateful for not eating the food I’d cooked. I instinctively knew that was the wrong approach! I was right in that, at least.

Many CAMHS and Adult Services still don’t provide up to date ED treatments. In fact, one particularly difficult female clinician, who was assigned to my daughter when she was 20, actually said to me a couple of years ago on my questioning: “This is how we have always done it, since the 1970’s.” This old-school approach needs to end!

Resources in mental health services are desperately needed in general, but more specifically we need:

• more ED hospitals/beds
• more and better qualified staff
• vastly improved community care
• more psychological therapists for both in-patient and community care
• access to latest research and treatment methods
• law changes to allow over 18’s suffering with ED’s to remain under parents’ care

Currently in UK, as soon as you hit 18 the parents are rarely consulted and are frequently told to back off. The UK’s legal system means that an 18 year old can leave home and, if deemed ill enough, are entitled to Disability Benefits, rent payments to a certain level and just enough money to live off. All this does is provide a ‘safe’ bubble that allows them to isolate further into their illness, unless the sufferer wants to recover and works with their treatment team. If not – and many sufferers, my daughter included, finds it too hard to eat what their bodies need when alone – they face a miserable life of purgatory. If they even survive.

We need change NOW!

Dear ICED: Getting Family Based Treatment for Eating Disorders Early Can Save Lives!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Nell Justice

Las Vegas, Nevada, USA

Getting Family Based Treatment for Eating Disorders Early Can Save Lives!

In 2012 my youngest child was diagnosed with Anorexia Nervosa.  She was 16. She was a competitive

soccer player, top of her game. She quit soccer, couldn't eat. I thought she was just depressed because of quitting. She complained of feeling bloated and she started having anxiety attacks and couldn't eat. She had lost 17 pounds in a very short time. She was small to begin with.

I had no idea what was happening, she was losing weight and couldn't eat. I took her to the

pediatrician where he diagnosed her with Anorexia Nervosa. He explained that he did not handle

patients with AN but gave me the name of a psychiatrist, told me to read the book, Eating With Your

Anorexic by Laura Collins. I was also advised to go to UCSD if the psychiatrist didn't work out.

On my own I found, Around the Dinner Table (FEAST).  Here I learned about family based therapy. We found the only therapist that did FBT in our state of Nevada and took her there.

With this evidence-based approach FBT, group therapy and DBT skills, my daughter is now in

recovery. She continues to go to therapy every 2 months just to stay on top of things.  My daughter remembers feeling fat at age 4. She remembers restricting at age 11. I never knew any symptoms of eating disorders. I knew that she was a perfectionist and had OCD. I didn't know those were personality traits that are common in a person who has a brain wired to develop an ED. Watching a child roll around in a fetal position calling themselves a fat pig and shaking to put a fork of food to their mouths is horrible! Watching them starve because they just can't eat is beyond painful.

Eating Disorders are a mental illness! A Brain disorder!

More can and should be done to help those who suffer! More research, more education, more evidence-based treatment and more insurance coverage! Families should not have to go bankrupt to get medical care for their dying loved one!  I will never stop trying to educate others, it could save a life!

Nell Justice, Las Vegas Nevada

PS. The psychiatrists knew NOTHING about eating disorders and she didn't accept insurance. First

visit was $500 dollars and then $300 dollars an hour! Parents are desperate to get help and often go

broke trying to find it!

Dear ICED: Ongoing support is needed to sustain recovery!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Eating Disorders:  Ongoing support is needed to sustain recovery!  

My 16 yr old daughter was officially diagnosed with Anorexia Nervosa in November 2014 with the help of her dietitian she had been seeing since July. The seriousness of her illness came to light when I discovered she had been wearing weights for her weekly weigh-ins. Due to the seriousness of her illness, her dietitian advocated for residential treatment center over going through PHP or IOP for her best chance of recovery.

With a broken heart, we started the process. There were only two options in-network in our state (neither of which I felt good about); so we went out of state which was thankfully only a short drive away. We got through the intake, got all the blood labs, tests needed done; and got our admit date. I thought everything was a go. I was wrong.

We showed up for our admission appointment and had to go through more intake process, only to find out insurance had not officially authorized treatment. After 6 hours of waiting, insurance denied authorization. They denied because my daughter had not ‘stepped up’ through the process with Partial inpatient (PHP) or Intensive outpatient (IOP) programs. The treatment center fought for us. Two days, only two days, were finally approved – AND ONLY because after looking our insurance saw that we had no options for PHP or IOP in our immediate area. I remember I thought “two days? Why bother? I don’t want her to go through this and then be sent home”, this just wasn’t right. Four days later she was sent to the ER for some medical stabilization. Get the message now insurance?? She went back to the residential treatment center after the hospital discharge. My daughter ended up being there for 47 days, approval coming in 3-5 day increments. I understand the reason for approval coming in short increments, but it is extremely hard on parents who are fighting for the life of their child. She received extra time there due to the fact we had no treatment options in our area.  My daughter’s stay there was successful.  She left weight restored, happy, and motivated for recovery.

Fast forward a few months through PHP and IOP at one of few options for treatment as I said, an hour away from home. The treatment center that we were able to go to was not a good step down program for my daughter. In addition to focus on regularizing eating she also needed psychodynamic therapy.  Her time there ended up being traumatic for her, leaving her with a lot of anger, and leading her to the beginning of relapse. Now we are facing the same difficulties finding an outpatient ED therapist. I never knew getting treatment for such a devastating illness would be so hard and complicated.

The author prefers to remain anonymous.

Dear ICED: "You are too FAT to have an Eating Disorder”

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Nurse told my daughter “You are too FAT to have an Eating Disorder”

In her preteens, my daughter became obese over the course of a year because of a medical issue. As we got the issue under control with medication, she started losing some of the weight. But it wasn’t happening quickly enough, in her mind. She quietly decided she was going to speed up the weight loss. She started skipping school lunch. Then she started telling us she had eaten a big lunch and didn’t want dinner.

“I wanted to lose weight faster,” she said. “One day the voice was just there. It was like someone flipped a switch. Any time I thought of food, it started telling me that I was ugly. Disgusting. Fat. I wasn’t worthy of food. I wasn’t even worthy of living. Nobody really loved me. Only the voice loved me. Everyone was lying to me, but the voice was telling the truth. That’s how it was when ED entered my life. I didn’t know what it was then. I thought it was the truth.”

She didn’t share her food struggles. We thought her weight loss meant her medications were successfully managing her medical condition. She was still overweight. Her moods started plunging into a big black hole. She failed classes. Got in trouble at school. Stopped activities she loved. Finally, she was hospitalized with depression and suicidal thoughts.

In the hospital, she told her therapist she thought she had an eating disorder. It was discussed in therapy, but as it was a short-term hospitalization, the real work was supposed to start after discharge.

Except at discharge, which happened without me present, the discharging nurse looked at my daughter, said “you are way too fat to have an eating disorder” and took whiteout to the line where the psychiatrist had written the diagnosis “Eating Disorder Not Otherwise Specified.”

My daughter didn’t tell me. She was ashamed. “I had just gotten evidence that I was a failure at everything,” she said. “I couldn’t even get having an eating disorder right.”

It took her two more months of depression and self-harm to tell me what happened. Today, she has been in treatment for ED for almost five months. Therapy and nutritionist wasn’t enough. She’s spent another stint inpatient with suicidal thoughts. She’s heading for a partial hospitalization program.

Because she is still overweight, and because she is actively fighting the ED voice in her head, she’s not a candidate for long-term residential care. The thoughts that torment her, that make her decide to alternately binge/purge and restrict aren’t visible. She wants help. She wants to get better. But finding the right treatment fit for her is an ongoing struggle. And we’ve fought to find medical providers who are informed and educated enough to know that an overweight person can suffer from an eating disorder and need just as much help as an underweight person.

The author prefers to remain Anonymous at this time.

Note: Eating disorders not otherwise specified (EDNOS) are eating disorders that do not meet the exact criteria for anorexia or bulimia nervosa but are considered serious conditions.  Binge-eating disorder is a type of eating disorder and EDNOS is the most common diagnosis among people who seek treatment.

Dear ICED: Turned away because they only took females

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Turned away because they only took females

Maria Candrill

Staten Island, NY

Sal's eating disorder began about 9 years ago.He said that when he was in 6-7th grade that the kids would make fun of him because he was chunky. When he started high school he travelled to the city and joined the football team. From September to December he lost about 40 pounds. When his friends from junior high saw him over vacation they didn't even recognize him. He transferred schools in December and joined the track team. He said that during that summer he got sick and he threw up. He said that something just clicked in his head that he could eat and just throw up. I didn't realize that anything was wrong for over 6 months. One night I heard him calling me from the bathroom. He was lying on the floor with vomit all over. He was diagnosed with bulimia in 2006. From the age of 16, he has been in and out of treatment centers. Back then I knew nothing. I made a lot of phone calls, did a lot of research online and read many books. Sal was turned away from many facilities because they only took females. When I found a place that took males I had issues with my insurance. After nine years I'm well educated. Thru NEDA, I met Lisa Kantor and she has helped me with several issues that I have had with the insurance. I still self paid hundreds of thousands of dollars. Sal has been to New York(where we live) Wisconsin, California,Colorado  and Arizona for treatment. Some of the facilities he has gone to several times. He has had some periods of time where he was stabilized and in a good place but  unfortunately since he turned 21 it has been very difficult. He would go to the hospital to be stabilized and then to a psych ward which couldn't deal with ED. The cycle would continue until I would pay for treatment. I would arrange for flights and transportation to take him to a facility because he would say that he wants help. Then he would get there and not comply. This past year I flew him from AZ to CA to WI to AZ to CA back to NY.He went from hospital to treatment center to psych wards to homeless shelters to hotels. I had to keep a log for every day so I could keep track of where he was.I was calling hospitals and psych wards to try and locate him. I couldn't always get information because of the HIPA laws and then he wouldn't always sign the papers so the facility could speak with me. It depended on his mood.It was crazy.I brought him home the day before Thanksgiving 2014 because he was getting kicked out of another facility for not complying. It was a choice between sending him to a homeless shelter again in CA or bringing him home. Unfortunately he brought his ED home with him. It was not healthy for myself, my daughter and my boyfriend, so I told him he had to leave if he wouldn't get help.It was one the the toughest decisions I ever had to make. He left on Jan 17, 2015 because I could no longer have ED in my home.He went to live with a friend in Colorado. He ended up in several hospitals and a psych ward. On Mar. 20th I flew him back to CA to go to a facility that he had gone to before last year. He lasted 11 days without any ED behaviors and then he refused to take his meds. It was decided yet again that he needed a higher level of care. He was taken to a hospital. As I am writing this I was informed that he will be transferred today to a psych ward and when he has been ED behavior free he will be able to return to the ED facility. The cycle continues.I will no longer pay for any more flights or any more treatment that is not covered under the insurance. Tomorrow he will be 24 years old. I am learning to accept that I can't fix my son. I can't save him from the demons inside him. I have always said that Sal is welcome to live with me but ED is not allowed.I still believe that there is hope and someday Sal will be ready for recovery.

Dear ICED: A mother’s experience in navigating Eating Disorder Treatment in Ontario

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Her daughter was dying:  A mother’s experience in navigating Eating Disorder Treatment in Ontario
Ontario, Canada

My name is Julie.

I am a mother of four, one son and 3 daughters, the last two being twins. I am primarily a stay at home mother, with a self-employed husband who works mostly from home. I live just outside of a small town in Ontario.

When “G”, my youngest, was approaching her 17th birthday, I noticed changes in mood as well as body. She was an excellent student and rugby player. As the summer rolled around and she turned 17, there was a noticeable weight loss and mood changes as she was eating “healthy”. Now with protruding bones and seemingly very depressed, I knew we were dealing with Anorexia and Depression.

I got her an appointment with the Family and Youth Clinic at Peterborough Regional Hospital, one hour away, with a team of a social worker, nurse practitioner and dietitian, as well as our local family doctor. Blood tests indicated malnourishment, ECG showed a very dangerously low heart rate, and mentally she was unstable, saying she had a plan for suicide. She was always tired and cold.

She was no longer the daughter I knew. She was withdrawn, moody, sometimes mildly violent and had started to self harm.

As her BMI dropped, I was told she would be put on a wait list for SickKids or CHEO. I was told the wait was 3 to 6 months. At this point I worried that her organs, particularly her weak heart, would deteriorate to the point of shutting down.

I knew my daughter was dying. Since she was so medically unstable, and our timing was right, “G” ended up jumping the queue at SickKids and spent a month there. Ten months of outpatient treatment at PRHC, with a psychiatrist added to the team, she was discharged and is now away at college where she sees a nurse practitioner once per week.

My daughter was one of the lucky ones.

I got her into treatment quickly, mainly from my own research; my doctor has had no experience in dealing with Eating Disorders and could not help except to run tests and monitor her vitals. She had to learn along the way, which did not instill confidence in me as a parent of a very sick child. My daughter was treated quickly due to her medical instability, but unfortunately she had to be close to death to get that treatment.

Now away at college and “in recovery” my daughter is responsible for her own health. If she relapses, the story will be different. It may not have the same happy ending as resources are sadly lacking for her age group (young adults 18 – 25).

In the meantime I stay vigilant and continue to research ways in which to help her.

Deart ICED: She had to leave her own country to get Eating Disorder Treatment!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

She had to leave her own country to get Eating Disorder Treatment! 
Ontario, Canada

My name is Kelly.  My Eating Disorder (ED) began at the ripe age of six and slowly inscribed its way into my everyday life, and by the time I was a teenager it seemed like it was innate behaviours. My family never paid much attention to the way I would manipulate my food because it had been a part of my life for so long–they always just assumed I was a “picky eater.”

I finished high school and moved away for University. My first year of University was the benchmark for freedom to do what I wanted and essentially become engulfed with my ED. My Eating Disorder was never about wanting to lose weight, or wanting to be skinny, that was only a side effect of a much bigger struggle with anxiety and obsessive-compulsive perfectionism.

Life with my Eating Disorder raged on and regretfully I had to drop out of school; I attempted to recover once, but was kicked out of the residential program before I had a chance to really make the progress that necessary for full recovery.

I moved back home following my discharge and the next year I started my Bachelors of Science in Registered Nursing program. This was the catalyst to the worse years of my life. School is very anxiety-provoking and stress is something I had never learned how to cope with.

By the second year of the program, I was totally lost in my Eating Disorder, but somehow managed to maintain high grades and show up to class. The coordinator of my program was the first person to sit down with me and tell me that she thought I had a problem, as she had watched me deteriorate over the prior year and a half. I finally confided in her my deepest struggle.

At the same time, I was seeing the best doctor in the city for Eating Disorders. Doctor S would see me once a week, and this continued for several months. She encouraged me to seek residential treatment again, as I was in the hospital 2-3 times a week receiving fluids and potassium (note: many individuals with Eating Disorders die of cardiac arrest). My body was slowly failing, it would take 5-7 hours for my body to handle the liter of fluids because my heart rate would sky rocket due to the change in my fluid status.

Finally, I decided it was time for treatment because Dr. S told me that I didn’t have much longer before my heart would give out. When I called Credit Valley to find out admission criteria I was told I needed to have a BMI of less than 15 to be considered (Note: this is like requiring people to have Stage IV cancer before being treated).

So I decided to lose more weight in order to get admitted, just to have to turn around and put it back on as part of treatment. However, Dr. S wanted me to get into treatment as soon as possible. We decided to see if I could get out of country coverage. The process was extensive, and our first denial came quickly. We were told that, since Dr. S is not a psychiatrist that specializes in Eating Disorders, I wouldn’t be considered. We appealed it and informed them Dr. S is the only Physician from my city who manages Eating Disorder patients. They denied us again. We appealed it, and with that sent in a letter from the coordinator of my program explaining my deterioration over the year and how desperately I needed this care.

During this time I had multiple visits to the ER, a serious physical decline and my weight was dropping. When I finally was under a BMI of 15, I was told the waitlist for a bed at Credit Valley or TGH would be 10-12 months. I would not survive that long.

We waited to hear from OHIP and were denied again. They told me that I would need to travel to Toronto once a week for three months to build a rapport with Dr. W and that he can fill out the paper work after the three months. Infuriated, Dr. S knew I could not physically make the drive there and back and what an unreasonable expectation that was.

With our final appeal, seven psychiatrists across my city wrote on Dr. S’ behalf explaining that when they have patients with Eating Disorders they send them to her because she is the only doctor who knows what to do. OHIP finally approved my request.

I left for Rogers Memorial Hospital in May of 2012. Three days after my admission to the residential home, I suffered a heart attack. Thankfully, I was where I was when it happened and received timely adequate help and support. I stayed in residential treatment until November 2012.

I was the first person from Ontario to be covered for a five-week step down day program to ensure that my transition out of residential would not result in a relapse, and had I come home after my discharge there would be no adequate care.

I am now two-and-a-half years into full recovery, 26 years old and just graduated with my Bachelors of Science in Registered Nursing. Every time I revisit my experience with Canadian resources I am left feeling disappointed and heartbroken.

I should not have had to leave my own country to get what I needed. I should not have had to wait until I was days from a heart attack to get what I needed. I should not have had to fight so hard to get the coverage for the treatment. This system needs to change and the change needs to start now.