The deadly cost of diversity in accessing Eating Disorder treatment

I was labeled the Anorexic in room #5. I have a name and it’s NOT Anorexia. I have passions, dreams, and a purpose and I am NOT defined by a diagnosis. Read Carey Cronin-Guevara’s story in support of World Eating Disorder Action Day, June 2.

Eating Disorders have the highest mortality rate of any psychiatric illness. Losing a person you care about in this way should never happen to anyone. We need more understanding, more educating, and more advocacy.  Eating Disorders are “real” illnesses. They are not about food, weight, or even wanting to look a certain way. Eating Disorders DO NOT discriminate. Sadly, diversity plays a huge part in this awful illness.   

Eating Disorders take many lives every year and it doesn’t matter if you are a man, woman, bisexual, transgender or gay. Socioeconomic status, race, lifestyle, shape, size, weight, religion, job, education, body shape, or even ethnicity, are irrelevant.  Whether it be Anorexia, Bulimia, Binge Eating Disorder, Compulsive Exercise, or Otherwise Specified Feeding Eating Disorder (OSFED) ALL Eating Disorders can be deadly.

Nobody chooses to have an eating disorder.  We must look underneath and find the real problem rather than using the Eating Disorder’s very unhealthy coping mechanisms. Recovery involves getting in touch with and reframing feelings, thoughts, mindset that have become embedded inside your brain from a young age. Eating Disorders are about insecurity, self-hatred, feelings of worthlessness and anger so strong you are unable to cope. They are about having a super sensitive personality. Recovery involves addressing the  negative thoughts that tell you “you aren’t good enough.” You ARE good enough no matter what the eating disorder is telling you. Secrets keep us sick and you are only as sick as your secrets. Please reach out for the help you need before it takes your life too.

When I was diagnosed in High School, over 20 years ago, accessing treatment was extremely difficult. It still is. Eating Disorder treatment and insurance companies choose who is worthy of receiving lifesaving treatment. No matter how long you have struggled, everyone deserves access to good quality treatment and we know through research that evidenced based treatment works.

Eating Disorder are known to have a genetic preposition. In my family I was genetically vulnerable as my mom, grandmother, and numerous cousins have suffered. One cousin has sought treatment, but the others are in denial. Other forms of mental Illness also run in my family with bipolar, depression, anxiety, and suicide.

My father was diagnosed with cancer in 2018 and arrangements were made for him to see the best oncologist in in his home state and receive the best treatment for his diagnosis. However, when someone is diagnosed with an eating disorder they don’t receive the same type of lifesaving treatment. Diversity plays a huge part in this. Too often the person with the Eating Disorder is turned away to fend for themselves, and they lose their life to the eating disorder. I was lucky because I had the mindset that recovery was possible. Yes, it was hard and I had a lot of slips and slides along the way and fell more times than I can count but I always picked myself up and continued to move forward. 

I have fought for proper and fair treatment for many years and I was not wealthy enough to pay for the treatment. My insurance company only covered 30 days per year for a residential facility which isn’t enough to even touch the issues that brought on the eating disorder. Throughout many years of treatment I have been turned down time and time again with no real reason why, but I knew it was because of diversity, not deemed being “sick enough” or being wealthy. 

My name  is not Anorexia

As a result the best treatment I could receive was in the ER where I was judged and belittled that the eating disorder was my fault. I was told I was “seeking attention”, “faking it”, and all I needed to do was “just eat”. I was labeled the Anorexic in room #5. I have a name and it’s NOT Anorexia. I have passions, dreams, and a purpose and I am NOT defined by a diagnosis.  Diversity has set the standard for who is fortunate enough to receive treatment and who is not. I did not choose to have an eating disorder. Eating Disorders are brain disorders, a chemical imbalance in the brain. No one has control over this and should not be judged or put down as a result of this.

I entered a treatment center across the country that my insurance at the time approved for and I was extremely sick to the point I was told I may not survive and to this today we don’t know how I got to the airport and on a plane to treatment. After arriving and being there 20 minutes and having vitals taken it was necessary for tube feeding to occur. I was severely dehydrated and I had lab work done and 12 hours after being admitted my insurance denied coverage. My lab work had not even come back and, yet and when it did it was awful. My physician informed me that insurance denied my stay. It was appealed twice and denied because I was not “sick enough”. It appears diversity played a huge part in my insurance decision to deny coverage. Ethically the treatment center could not send me home because I was so sick. I received a scholarship for a week to get me stable and I feel blessed. Insurance denies people lifesaving treatment every day.

Diversity has played a huge part in receiving the treatment that I desperately need. I don’t meet the socioeconomic status, religion, race, and I’m not wealthy.

Eating Disorders in today’s society is a “real” and sometimes lethal problem and we need to fix it NOW. Not tomorrow or even next week but NOW. Sitting around wondering what to do will not help those struggling and suffering…we need to be proactive.

Why does it take a celebrity’s death to realize there’s a “real” problem with those who are deemed for receive treatment  and those who are not. Celebrities open the eyes that diversity is keeping very sick individuals from receiving lifesaving treatment. 

Often those who suffer from Eating Disorders are people pleasers, top of the class, not wanting to upset anyone, very sensitive personalities and shy. They are capable of hiding the pain and putting on a “fake smile” in order not to cause others to worry and are very capable of hiding that there is a problem by wearing baggy clothes to hide dramatic weight loss. 

Those that have suffered for some time before anyone is aware of the problem are far more sick than anyone or even they realize. Symptoms may include not being able to make clear decisions on their own behalf, obsessiveness with numbers and hiding any weight loss.

Often co-existing conditions are associated with Eating Disorders such as Depression, Anxiety, Obsessive Compulsive Disorder (OCD), Bipolar, PTSD and Trauma, Domestic Violence, Self-Harm, Addictions, Stress and even Borderline Personality Disorder just to name a few. 

Eating Disorder Awareness and Prevention has been an issue for years and is very misunderstood and complex. I have known families who have been ripped apart due to an Eating Disorder. In the past year alone, I have lost four incredible people due to an Eating Disorder and it wasn’t their fault. Over the years I have lost as many as 10 wonderful people and it always leaves the question of “why”? or “what could I have done differently?”. 

Through research we do know certain genetic factors raise the risk for developing an eating disorder. If you have a family member who has an Eating Disorder, your risk of developing an Eating Disorder is increased because there is often times a genetic preposition to the development of this illness. Other factors include the environment that you grew up in, personality traits, trauma and abuse, dysfunctional family and sometimes the cause is unknown. As Cynthia Bulik, who is the Medical Director at UNC For Eating Disorders says, “Genes load the gun and environment pulls the trigger.” 

We need society to understand is that the illness is not anyone’s fault. It’s an illness that needs more research and clinical trials.  

About World Eating Disorders Action Day 2019

This year grassroots activists, volunteers, and over 250 organizations in 40+ countries are calling for caregivers to receive support, health care workers to be properly trained, and access to immediate, evidence-based treatment.

Why We Can’t Afford to Wait

  • Worldwide over 70 million people are estimated to be affected by an eating disorder,
  • Eating disorders have the HIGHEST MORTALITY RATE of any psychiatric illness
  • Eating disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. It is time to take action.
  • Good news! When treated EARLY and correctly, eating disorders have the highest and fastest recovery rate!   

How to support World Eating Disorders Action Day, June 2, 2019

  1. Join the movement, show your purple on social media! Use hashtag #ShowUsYourPurple
  1. Follow conversation on social media. Use hashtags #ShowUsYourPurple #WeDoActNow
  1. Host or attend an event. See  http://www.worldeatingdisordersday.org/2019-events-2/
  1. Donate. To support the work see http://www.worldeatingdisordersday.org/get-involved/participating-organisations/.
  1. Discuss eating disorders. Through open, supportive dialogue, we can create change.

E-book release: Come as you are, eating disorders can’t wait

 

As a Participating Organisation supporting 2019 World Eating Disorder Action Day, The Diary Healerhas released  a new ebook, Come as you are, eating disorders can’t wait. Stories from around the world illustrate that recovery from an eating disorder IS possible, at every age. The first step, is to seek help. Click here to purchase a copy for $9.97 (AUD) – all profits support eating disorder services.