Wednesday, January 28, 2015

Canada: A System That Fails Those With Eating Disorders

Eating Disorders are brain-based, biological illnesses with a strong genetic component. 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!

Karen's Story

Where to begin? I believe that this is and will be the most difficult task I will ever be involved in, filled with the unknown, fear, uncertainty and grief. I am the mother of an adult daughter (age 30 ) with an eating disorder spanning a time period of 15 years so far.

We reside in a Toronto, Ontario suburb. Our journey began in high school when we discovered our daughter had started binging and purging.  Of course the denials were there though we finally convinced her family doctor, who did not seem to be terribly concerned, to refer to a nutritionist. Our daughter insisted that she had everything under control and that this was an infrequent occurrence. 

She was fairly stable for 10 years.

Looking back there were things we, and others, should have picked up on, such as low self esteem, some OCD behaviours, inability to be satisfied with her job and changing jobs frequently, financial difficulties and some heavy drinking. As time went one, she declined. Four years ago  she entered intensive outpatient treatment for 3 months followed by six weeks of transition after a three month wait. She relapsed four months later.

The last four years have been awful as she quickly went downhill with severe bulimia and purging, laxative abuse and restricting food intake. She is unable to work due to high anxiety, panic attacks and weakness. She went on disability and lived with us.

She consented to treatment once again and after a four month wait was admitted to intensive inpatient at a hospital-based program due to malnourishment. By admission time she had lost the incentive and discharged herself after three weeks. She found the program repetitive with too many groups and not enough individual work.  Continuing to become more and more ill, with closer monitoring by physicians and a few day admissions to hospital for IV potassium, we and her therapist convinced her to try treatment in the states.  

She consented and was there within a week . She stayed three months and had individual counseling, nutrition  counseling  and group therapy all on a daily basis. On discharge there was no appropriate follow up here In Canada which contributed to relapse again months later. The out-of-pocket cost was 1400.00 a day.

Her concurrent alcohol abuse escalated and anxiety worsened and presently she is in an alcohol rehab center paid for by us.  No government-sponsored centers will treat coexisting disorders at the same time (eating disorders often have co-morbid conditions such as anxiety, OCD and substance abuse).

The Canadian system fails due to too long wait times which mean sufferers change their mind and lose motivation.  Minimal individual therapies in treatment.  Groups can be triggering and after a few times in treatment become repetitive.  The Canadian system fails due to lack of education for physicians to recognize and act on eating disorders quickly (prompt, aggressive treatment prevents eating disorders from becoming chronic). The Canadian System fails due to lack of follow up treatment for out-of-country clients when they have had to turn to another country due to long wait times here. The Canadian system fails due to lack of involvement of parents due to confidentiality and lack of age-appropriate treatment for adults.

Financial responsibility is put on parents for the adult child as they can't work to fund the psychologists, medications, out-of-country treatment and other expenses.

The dread and fear we live with watching our daughter waste away physically and mentally from malnourishment and organ failure is terrifying.

Most tragic is the time spent in sheer hell, suffering and wasting away with this terrible disease when there is the possibility of recovery if treatment can be given in timely manner with effective, evidence-based protocols; to me this is pathetic and inhumane.

Thank you for your interest; we need to make the Canadian system one of success, not failure.

1 comment :

  1. Karen, my heart is with you, your family and your daughter. Your story is our story. I am also the mom of an adult child suffering with this hideously underfunded, undertreated, most deadly of all mental illnesses.