Saturday, March 21, 2015

Canada: Recovery Takes Longer than A Few Weeks

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!
Canada: Recovery Takes Longer than A Few Weeks

I have been the stepmother of a young adolescent since July of 2011. She was seventeen when her father and I married, and had already been suffering from bulimia for two years; she would regularly binge eat and throw up afterwards. Sometimes as many as six times a day. Initially, I think she started binging and purging to stay thin.

In early July of 2013, she had an appointment for an evaluation at CAMH. When we arrived at 11am she had both drugs and alcohol in her system and were told that the clinic would not offer any eating disorder treatment because of this. We were told that she must be drug and alcohol free before any treatment could be started. At the time, we felt clueless as to how to get her to adhere to his condition.
Just a couple of days after this, her father called 911 as she told him that she couldn’t remember how many prescription pills she had taken. She was admitted under form T1.   She was then admitted to the alcohol detox program at CAMH which she attended for four days and was released.

Between July and September that year,  she went to live with her Mom, who attempted to control her eating disorder by placing her own bed in front of the refrigerator. She did this so that she could guard it overnight, in order to stop her daughter from binge eating and purging.

Around the middle of September, she was accepted to live at the Ingles House with five other young woman. She continued to be drug and alcohol free at this time, but was receiving no support regarding her eating disorder.

Just a month later, in October, she was asked to leave the Ingles House due to her disruptive eating disorder behaviours.

In November, she came back to live with us at our house and stayed until late January of 2014. Her eating disorder seemed  worse than ever. Finally, in February 2014, she was placed in an inpatient program at TGH. She started to show great improvement, but it seemed like too little too late; we had waited such a long time for her to finally receive the help she needed.

At the end of February she was moved on to the outpatient five-day program. She did fairly well, except for some “slip ups”. We tried to get some information from the program at TGH to help with her recovery process as her caretakers, but none of the administrators or doctors responded. The only source of direct information we were able to get  was at Sheena’s place and from the internet. She then moved on to an outpatient two-day program. in March, and in April she was dismissed from this program.

After the outpatient treatment stopped, her eating disorder worsened again. We paid for some private therapy sessions, but she showed no improvement at all.  We finally resorted to removing all of the food from the house. In October she moved out to  share an apartment with a girl-friend.
In February, 2015, she admitted to her father that her eating disorder was totally out of control and that she was afraid for her life. She was dangerously thin. In an attempt to try and help her, he went to TGH to find out if she could again be admitted into the eating disorder program. Only because of his efforts, was she evaluated on in late February and started on a three week, five-days-a-week outpatient program at TGH at the beginning of March. 

The question remains: What will happen after the three weeks are up?

It deeply concerns me that a person, and especially a young adolescent with a life-threatening eating disorder, is not able to understand the protocol to be followed at CAMH. There is no communication at all to the caretaker or parent unless written consent is given from the patient on the hospital form by the doctor in the presence of the caretaker. This system creates a dangerous situation for any person suffering from an eating disorder as it meant that it is hard for them to continue treatment once they are dismissed from the inpatient facility.

I question why there are there so few inpatient beds for people with eating disorders available? The inpatient program really made a difference, but because there was never a follow up treatment or involvement plan for the caretakers, it had little effect in the end.

Sunday, March 15, 2015

Canada: Where Treatment Protocols Don't Make Fiscal Sense

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!

Canada: Where Treatment Protocols Don't Even Make Fiscal Sense

I was diagnosed at 16 years old by a psychiatrist I was referred to at a hospital in Ottawa. The meeting lasted no longer than 12 minutes and I was out the door unsure of what step to take next. I had to tell my family doctor the diagnosis myself and explain what little I knew since the psychiatrist did not follow up or contact my GP.

Then on began my battle with the system and multiple eating disorders. As things got worse and my parents were kept in the dark I stopped going to school and demanded to be homeschooled. Meanwhile I slept all day, rarely ate dinner and exercised all day. I had been waiting for a referral to CHEO for 8 months now and I was to be turning 18 five months after my set assessment date. That would be enough time to tackle the disorder right? Wrong because I would not get that chance.

My family and I arrived at CHEO and were told my appointment had been canceled but we had no idea. I was told that the doctors felt that I had more of a mood disorder and that they would not be helping me. Devastated, embarrassed and confused I strived to become more sick. To fit the mold in order to receive proper care.

Things only got worse and my mental and physical health continued to deteriorate and I was barely getting through the average day of grade 12. My Mom ended up contacting Dr. Spettigue from CHEO and explained to her the neglect that went on with my so called referral. By the time I finally met Dr. Spettigue I was ambivalent towards life and recovery. I did not feel I deserved or need recovery.

Thankfully she was able to see and understand that I needed intensive care immediately. Unfortunately for me the program at CHEO was full and to no surprise I had no interest in going into a program that did not think I had an eating disorder. So Avalon Hills in Logan Utah was brought up and she made the referral with my psychologist to have me leave for residential treatment as soon as possible.

It only took a month or so and OHIP came back confirming they would pay for my treatment. I was overwhelmed, excited and unsure. I dove into the program and was there from November 19th 2012 until January 30th 2013. I discharged 2 days before my 18th birthday. I had an option to continue treatment at the adult home or go home and finish grade 12 on time. So of course I was ready to get the heck out. Too bad for me because I came home to a new and final semester of high school and I had no support outside of my home from processionals and I relapsed 2 1/2 months later and wound back at the same state I was before treatment.

There are two ways to look at this. If I had of stayed in treatment for a few more months I might of been in a better state and if I didn't and came home to the system with a proper team then maybe I wouldn't be 20 years old and still dealing with all of this. What would have been best is if I could have done recovery at home so my tradition was not so tough.

I live with a lot of regret and guilt but is it my fault that I have not received the care I need for the correct amount of time? When I left treatment I was still into my disorder but was high on the fact that I had freedom as an 18 year old. If I could go back to that day and did things differently I would.
I hope that our system will finally offer better long-term care here and that when treatment is through recovery isn't. I want men and women to have a different path than me.

Saturday, March 14, 2015

Canada: Treatment Should Not Require Luck Part 2

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!

Canada: Treatment Should Not Require Luck Part 2

I am writing this in support of the “What’s your story?” campaign put forth by the National Initiative on Eating Disorders.  As a survivor of Anorexia Nervosa, I support the mission put forth by NIED to educate the general public on the severity of living with an eating disorder, and the lack of resources supporting those who do.

 My eating disorder has been a life-long journey.  Although it only took two years for the physical symptoms to ruin my life, I lived 26 years believing absolutely nothing of myself.  The official diagnosis of my eating disorder was Anorexia Nervosa – Not Otherwise Specified, meaning there were multiple symptoms to my eating disorder (purging through self-induced vomiting, purging through exercise, no food intake, and laxatives).  The effects were almost immediate, and before I knew it, my health quickly started to fail me.  Not only were the numbers of my heart rate, body weight and BMI extremely low (and scary), but emotionally I felt unstable, numb, experienced loss of memory, fatigue, guilt, shame for body, and the list goes on.  As much as I knew things weren’t right in my life, the eating disorder tricked me into believing that gaining weight was more scary then how I was living my life at that moment.  I am thankful every day to have such supportive friends, and am amazing family who cared enough about me to get me the help I needed, even when I was adamant I had everything under control

My journey to recovery started at the Kingston General Hospital in Kingston, ON in July of 2012.  My first assessment at KGH was an evaluation with the nurse practitioner of the eating disorder program as well as the head psychiatrist.  Their first recommendation for me was to be admitted into an inpatient program in a hospital.  Unfortunately for those struggling with eating disorders in Ontario, there are only two hospitals with such a program, Ottawa General Hospital and Toronto General Hospital.  I was told that the wait list was two years long, but until then I could come once a week to the out-patient program at KGH.  Considering I thought the nurse practitioner and psychologist were “crazy” for wanting to admit me, I reluctantly began the out-patient program.  After approximately two months, I stopped attending the program as I found the environment to be too competitive and knew my symptoms were getting worse because of this.

 In the meantime, my parents, who were scared beyond belief, paid out of their pocket for me to see a private psychologist at home in Toronto who specialized in eating disorders.  I saw this woman twice a week for approximately one month.  I appreciated this woman as I could be completely honest with her about everything I was feeling, but felt an immense amount of guilt.  My parents were paying a fortune for this service, and I didn’t know how/believe I could get over this eating disorder.  As much as I loved going to these sessions and seeing this woman, and as much as I wanted to get better for my parents who were so supportive, I knew there was no one “forcing” me to eat, and I could not be this firm and disciplined with myself.  I still felt extremely trapped and consumed by this disease.

It was in October of 2012, approximately three months after being referred by the psychiatrist at Kingston General Hospital, did I get a call to for an assessment with Dr. Bissada of the eating disorder program at the Ottawa General Hospital in Ottawa, ON.  At the end of my assessment it was clear to Dr. Bissada that I needed to be admitted to the inpatient program, and as soon as possible.  The fear of my health failing me before I could get a bed in the hospital was a reality, one which scared my family to death.  I started to make weekly trips to Ottawa once a week for the in-patient readiness program.  There were approximately six other individuals who came to this programme each week, all of whom appeared to be in the same health conditions as myself.  More scary, all of whom who were also in complete denial that anything was wrong. 

Two more months went by, and in December of 2012 I was admitted into the inpatient program at OGH.  I will never forget the day my life changed, and for the very best way it could.  Making the choice to be admitted was the scariest decision I’ve ever made, but also the most important decision, as this program literally saved my life.  There are only six beds in this program, and as I learned more and more, those beds are reserved for only the sickest of the sick.  This is not something I am proud of, but something that I thank God for that I was able to get one of those beds.  Without the help of OGH and the wonderful doctors and nurses, I would not be able to share my story with you today. 

It saddens me that TOO many people out there, who struggle with the same eating disordered thoughts that I once did, do not have this opportunity to save their own lives.  Those living with eating disorders often do so in shame and with guilt as the famous lines, “just eat” are thrown at us as our only solution.  If we could “just eat”, then Anorexia Nervosa would not be a problem.  Unfortunately, the general public, anyone who hasn’t lived with an eating disorder, does not fully understand the experience of what it is to do so.  I am blessed with a family who tried so hard to support me, and to save my life, even if they had no idea where to begin.  Unfortunately, not every family is as supportive as mine, and there are many individuals who struggle with this disease alone.  Resources need to be created, or allocated to not only those who are struggling, but also for their families and friends who are desperately trying to know how they can help.

I recognize this post exceeds the 500 word limit, but I did not want to delete any of my story to save space.  The best part, which I have yet to share, is that thanks to OGH and the hard work I put into the program, I can proudly say I am two years into my own recovery from Anorexia Nervosa.  It is not easy, and every day is work, but I have learned that I am, and my life is, totally worth it.  I pray for the day that all those who struggle can learn to accept this truth as well.

Friday, March 13, 2015

Canada: Treatment Should Not Require Luck Part 1

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!

Canada: Treatment Should Not Require Luck Part 1

I am writing this account in response to the NIED's effort to secure funding for adequate treatment and support of patients with Eating Disorders through our healthcare system.

In the summer of 2012 our daughter was diagnosed with Anorexia Nervosa - not otherwise specified....she was 26 years old. We were told by professionals that there was good news and bad news. The good news was, they felt our daughter would probably respond to an inpatient treatment program - the bad news was, there are only 18 beds in Ontario and the wait list is 2 years long.... our daughter would not survive the wait. We immediately starting researching other facilities both in Ontario and the United States but were refused help as my daughter's BMI was too low; meaning she needed urgent medical care which private facilities could not give her.  Our daughter's fate was sealed - she was going to die because of underfunding of eating disorder treatment programs in our hospitals.

Our story however, does have a very happy ending. The inpatient eating disorder program at the Ottawa Hospital runs on the premise that if patients are not "buying into" the way the program is run, they are asked to leave.  By some miracle, my daughter was admitted Dec. 6th 2012* and has been recovering since March of that year. Through a lot of hard work on my daughter's part (of which we are very proud) and the fantastic care, training and medical attention she received at the Ottawa Hospital, she is healthy.....and alive! Her days are not without struggles, but because of the exceptional treatment she received, she has "tools" that help her work through them. Before admission to the hospital, my daughter was seeing a therapist who specialized in eating disorders.  I asked her a few weeks ago, "If you were not admitted to the hospital, but instead kept seeing the therapist, would you have recovered?" Without hesitation her answer was "No.  The therapist didn't make me eat like I had to in the hospital!".

My daughter was saved - it is tragic that everyone with an ED does not have the same opportunity she did.

*I have thoughts on why my daughter was admitted so quickly, but space prevents me from listing them.

Wednesday, March 4, 2015

Sickness in the Brain: A Juxtaposition

Reflection During National Eating Disorder Week

by Chaya Jundef

It’s National Eating Disorder Week … A time which I usually celebrate.  Ironically, I spent much of the week in bed due to a serious brain infection.  All the resting hours have given me time to think…and think…

During the last week, I have been enveloped in love. From the moment my brain infection was diagnosed, family and friends came running: Can I help? Do you need supplies? Can I stay with you in the clinic?

The doctors treated me respectfully; reviewing the diagnosis and treatment options. The nurses were kind and happy to converse. My employers were understanding, and insisted I take off work. I was a PERSON, not an illness.

NO one said:
• What did you do wrong to get a brain infection?
• Why don’t you just get rid of it?
• If you try hard enough, the infection will go away on its own.
• It’s really selfish of you to develop a brain infection.
• This infection of yours is ruining your family.

And while I appreciate the kindness this week, my heart hurts. It hurts because I can’t help but contrast this reaction to my experience of 15 years battling a different type of brain infection….called an Eating Disorder.

During the years when my brain was “infected”, the reactions were not so kind. I experienced constant rejection:

• I was fired from my job of 8 years, where I had invested unlimited passion, after my boss discovered I had an eating disorder.

• The director of a National Youth Group (for which I volunteered 12 years) refused to allow me on the bus because, “You don’t belong with children” even though I had organized the entire trip.

• I vacationed with 4 girls in Miami who heard about my eating disorder while I was strolling outside. They placed my luggage on the porch, and locked me out of the house. I spent the rest of the vacation alone in a small motel.

• I was kicked out of the Israeli camp that I was directing after a friend told the owner about my eating disorder.  I wandered the streets in Israel for 3 days because I was too embarrassed to tell anyone….tired, dehydrated, lonely…. I finally boarded a plane to America and stayed in the airport because my parents wouldn’t allow me home. I had nowhere to go.

And then there were the comments….can I ever forget those hurtful comments?

Friend: “You need to try harder. Everyone can eat. So can you, if you try hard enough.”

Rabbi: “You know that you will go to Hell for destroying your body.” (Thanks, but I’m already experiencing Hell just living with an eating disorder.)

Neighbor: “I cannot allow you to enter my home because I have children, and you are contagious.”

Random Lady: “I never saw someone with so little hair. Did you just have chemo?” (Do you think I would tell a random stranger even if I did?)

Cousin: “You know, you were a pretty girl before you developed this illness.” (And now I’m just ugly?)

Aunt: “You destroyed all your chances of getting married.”

Principal: “You cannot have any communication with your students anymore, even outside of work. You are not a proper role model, and the students might catch your disease.”

Sister-in-Law: “Ummm….so I read about this THING that you have….and um….don’t worry, this THING doesn’t bother me.” (Thing = eating disorder…why can’t you just say it?)

Relative: “You know that your father’s hair turned white because of you.” (I loved my father, and his pain just increased mine.)

Rabbi: “You obviously are not a good Orthodox girl. You are trying to adopt secular culture, which idolizes fashion. You need to get this nonsense out of your head.”

Sister: “You are embarrassing me in front of all my friends.”

Sales Clerk: “What is wrong with girls nowadays? Are you trying to compete with the mannequin?”

Young Woman in Social Work Grad School: “It’s really interesting to speak to an anorexic. I mean, I learned about it, but you seem normal…… I recently read in a textbook that eating disorders are related to abuse. Were you sexually abused?” (Umm...does she honestly think I would discuss that with a stranger???)

Matchmaker: “You’re making it very difficult for your siblings. No one will want to marry someone whose sister has an eating disorder.”

Brother: “I have an idea. Let’s put you in a room with a tape recorder that says, ‘eat spaghetti’. And if you listen to it all day, you will start eating!” (Guess if that worked…??!!)

Friend:I wish you could teach me how to be anorexic for 2 weeks.  My sister is getting married, and I must lose weight before the wedding.”  (Should I also teach you how to have cancer? Or diabetes? Or lung disease? It’s so cool to know that illnesses can be TAUGHT.)

Principal of My High School (where I had been a star student, despite fainting numerous times) after I told her that I suspected a student had an eating disorder: “No student in this school has ever had an eating disorder. We are a respectable institution.” (Umm…So, I DIDN’T attend this respectable institution? That’s strange because my picture is hanging on the wall.)

Relative: “Do you realize how selfish you’re being?” (Do you have any idea how much I care for others, and how much I struggle to do anything for myself??)

Employer: “I suggest you teach boys instead of girls. Your illness won’t be contagious there.” (Because NO MALES develop eating disorders…???)

Friend: “Why are you trying so hard to look like a model?” (I had never even seen a model! I grew up without television or movies.)

Biology Teacher Who Saw Me in Hospital: “It would be interesting if you could come to my class. I could teach my students the entire human anatomy just by looking at you. You can see every bone protruding, even your ribs.” (Should I have agreed and charged for the lecture? Great idea for a future career…)

Social Worker Assigned to My Case: "So, you are an Orthodox young woman. I assume that your illness is your way of showing that you feel constrained within your religion." (No! No! NO! I only stayed alive because of my faith.)

Nutritionist Untrained in Eating Disorders: “So, have you been behaving good this week?” (Wow. Isn’t it great to know that my symptoms make me good or bad?)

Another Nutritionist Untrained in Eating Disorders: “So, you tell me that you’re not afraid of eating ketchup.  In that case, I want you to eat 4 cups of ketchup daily – 1 for each meal and 1 for snack. It makes no difference what you eat as long as you get calories.” (Honestly. And I followed instructions…until I got physically sick.)

 Nurse: “I can’t believe anything you say. I read that all anorexics are manipulative liars.” (Sure, because I'm just a textbook case. Do you know anything about my core values? How much I treasure honesty?)

Direct Care Worker: “I had plans for the weekend, but now I’m forced to work because a spoiled brat like you refuses to eat, and needs an adult to sit next to her by meals. It’s pathetic.”

Passerby: “Hey, Anorexic, get into hospital.”  (Yup. That’s me. I have no name or identity.  Just “anorexic”.)

Relative: If you really wanted to recover, you would go for treatment. You clearly don’t mind being sick.  (Do you know that I have been on a treatment waiting list for months? That I have to fight for insurance for any form of help?)

Friend: “You’ve done this long enough. Stop already.” (Oh. That's easy.)

Acquaintance: There are some people who are REALLY sick, like with cancer. They probably wish they could switch places with you. (Okay, let’s try it. I’m not sure they would agree once they experienced a day in the life of an eating disorder.)

Relative: “Don’t you think you already got enough attention? How much longer are you going to do this?” (I guess until I get MORE attention.....seriously, do you notice that I hide my symptoms? How embarrassed I am of my own behaviors?)

Aunt: “Your ED program sounds great. All you do is sit around all day, and meals are served to you. I wish I could have such a vacation. Stop complaining, and appreciate it.” (You’re right. I can’t believe I had the audacity to suggest treatment is hard.)

Matchmaker: “You have to be realistic about who will date you. I can suggest a paralyzed young man with cystic fibrosis, who can’t have children, and is missing one ear, but is WILLING to date a girl with your history.” (True story.)

Matchmaker # 2: “There is a man who is in his mid- 40s. He is currently unemployed and doesn’t look at women because he is really religious. I think he would be a good suggestion for you because he is obese, and you can teach him how to lose weight.” (Another true story.)

I would like to say Health Care Workers were better, but most were not educated:
• My pulse was below 40 one Friday…I went to the ER for help…after waiting for hours, the doctor said, “We don’t treat people like you. You need a psychiatric ward. Better yet, go home and eat some chicken soup with matzo balls.” Shabbos had already begun, so I explained that I couldn’t take a cab. He responded: “So walk”. Never mind that I was too weak to stand, and it was 10 degrees below zero.

• When the nurse tried to inject my first IV, I retreated in fear. She yanked my arm in frustration, pulling so hard that my shoulder was wrenched out of the socket, and left that way for nearly 24 hours. After all, I was just a crazy psychiatric patient who was overreacting. 


What can I say? My brain infection lasted 30 days. It was not terribly painful after the first few days of antibiotics. But, my eating disorder lasted 5, 475 days. Yes, five thousand, four hundred and seventy five days. Torturous days. Lonely days. Days where I prayed at night that I shouldn’t wake up in the morning b/c I couldn’t face another moment of this agony. Days where I sobbed and sobbed because I was so misunderstood, and the comments pierced my soul. And days where I didn’t cry at all because the pain was so great that I shut down completely.

I received concern and access to top treatment for one illness. And rejection, scorn, and impatience for the other.

But they are both brain infections, aren’t they? An eating disorder is also an infected brain…

I thank God for the miracle of the brain to rejuvenate. To heal. To start again. But my brain remembers. It remembers the rejection, the comments, the pain. And my heart remembers too. The brain healed, but my heart didn't.

I do not write from bitterness. No, I write from a deep desire to educate. To teach. To change. Why is a brain infection different than an infected brain? Why is one illness more deserving of care than another? Why aren’t people with eating disorders treated with the love and compassion that they deserve?

Some days I want to climb the Empire State Building, the one that is currently lit in color in honor of NEDAW. I want to cry out to the world, “I had an infected brain. But I AM NOT infected! And neither are the thousands of men and woman struggling around the world.”

Brain infections are real. Even the ones you can’t see on an MRI.