Call for compassionate care in treating eating disorders
By Juliana Winik
When I was 14, I was admitted to the paediatric ward at our local hospital with the eating disorder, Anorexia Nervosa. My body had begun shutting down. My physical decline from well to severely ill happened rapidly.
The morning I was admitted to the hospital was the first time I had heard the words Anorexia Nervosa as my diagnosis.
I was confused, and I was scared. Very scared. I had no idea what treatment was going to be like.
I was put on bedrest, and all autonomy was stripped from me. I didn’t understand why at the time. No one explained the nature of my illness to me nor did they bother to get to know me – me Juliana, and not Anorexia.
I didn’t know people with Anorexia were seen as manipulative, non-compliant, disobedient, over controlling, and “difficult.” These and similarly negative descriptors I have since heard many times uttered by staff in hospital and treatment environments, in describing someone suffering from Anorexia Nervosa.
At 14, I was actually very obedient to authority, sensitive, and an “eager to please” child. At this point in my illness and life I hadn’t even thought of “disobeying” the rules that were set out for me to get better. Such rules included remaining on bedrest, bathroom supervision, no showers, drinking the meal supplements and eventually completing solid meals within the allotted timeframe or I would be force fed via a nasogastric tube and so on.
Am I a horrible person?
From the moment I was wheeled onto that ward I was treated like a conniving, plotting, criminal waiting for my chance to strike and commit a crime. There was very little compassion or communication. Rather, I saw the fear in their eyes when the doctors, nurses, social worker, and dietitian approached me as though I was a wild animal that would pounce on them at any given second. I couldn’t understand.
What was so scary about me?
What was so wrong with me?
Why did they treat me from a distance with fear and trepidation in their eyes?
Am I a horrible person?
Should I be ashamed of myself?
During one of the first hours on the ward my mom stepped out into the hall to talk to the doctor. A nurse came in to take over supervising me. After some time, I asked the nurse to please get my mom to come back in because I was scared and I wanted someone to explain to me what was going on. When I asked the nurse, she leaned in close to my face and in a voice full of accusation she said, “You control your mom, don’t you? You manipulate her. Why do you want her? Hmm? Why do you want her?”
My illness was evil and manipulative, not me
Immediately I burst into tears. I did not want to manipulate my mom or hurt her in any way. I loved my mom and we were very close. Of course, over the months my illness had taken over and caused my mom to walk on eggshells around me.
The manifestation of the illness results in manipulation — I am not denying that and my mom was being manipulated but by the anorexia and not by me. I loved my mom so much and I didn’t WANT to do anything to hurt her. Ever. Just a few hours into my hospitalization I already was made to feel like a horrible, evil, cold-hearted person.
Yes, I did want my mom in that moment, but I only wanted her so she could give me a hug, and to explain the chaos that was occurring and tell me it was going to be okay. I was afraid and in shock. I was horrified that others thought I was deliberately trying to hurt my precious mom. I was just a child who needed love, and a frightened soul who needed care.
I needed firm guidance based on care and compassion
Self-loathing? Convinced I was flawed? Insecurities? I already had all of that tenfold. I didn’t need accusation, blame or guilt.
Did I need firm direction to save my life? Yes.
But I desperately needed this firm direction from a place of care, compassion, and love. I needed to be educated on the tormenting illness I was experiencing, and not just given a set of rules to abide by and contracts to sign without explanation. I needed a community of support. I did not need to have my friends forbidden to see me.
I was already having a hard time adjusting to high school, puberty, and the massive changes in life that come with them. The last thing I needed was to be made to feel such shame for my illness that I needed to be hidden and isolated from people who could offer reassurance and help me connect with a little of healthy self me. I spent a month confined to a bed and was alone, very alone (aside from the constant unyielding support of my parents and sisters and the few pre “approved” family friends).
Anorexia Nervosa is an illness, not a character flaw
The truth is…
Anorexia Nervosa does scream, manipulate, and lie. Even in the most subtle of ways it takes hold. I did not realize what had happened until a snowball effect had taken place and everyone was scrambling to regain some control over the illness. BUT it is an illness and not a character flaw of the person. Unfortunately, when treating individuals with Anorexia Nervosa, practitioners in healthcare are all too quick to give them the title of the “non-compliant anorexic,” “a burden,” “a selfish person,” who “just needs to eat…” And the list goes on.
I recognize and validate the frustration of treating a patient with Anorexia Nervosa who is resisting the treatment they may desperately need. But again, that is the very nature of the illness. Resistance should be expected, but not seen as a deliberate disobedience or see them as a “write off.” Rather, there needs to be a compassionate view of this resistance. Since my first admission when I was 14 I have unfortunately had subsequent admissions due to the pervasiveness and enduring nature of this illness. Most of these admissions have been as an adult, admitted to general medical wards or specialized treatment far from home.
Comforting and healing words help to allay the terror of treatment
Many times I have been equally torn inside wrestling with being ambivalent and resistant to treatment and being overcome with gratitude, and appreciation for the professionals who have stepped in to save my life on multiple occasions. Both are true, I am often equally terrified to accept help and wanting someone to save me from this exhausting battle. It’s a constant back and forth in my mind and soul.
Yes, I have experienced traumatic treatment but I have been fortunate too. I have met compassionate practitioners who have said the most healing words to me in times of great strife and turmoil with my illness. Some of these things are:
- “I can see your illness is so strong it’s overpowering you. I am here to help protect you from it.”
- “Wow, I can see Anorexia is really loud right now. You must be so exhausted and in pain. I am so sorry this is so difficult but I am not going to let you die.”
- “I don’t know a lot about Anorexia but I am going to consult with my colleagues and I am going to learn.”
- “These rules and guidelines aren’t here to punish you. Your eating disorder is so powerful right now these rules are here to help keep you safe and ultimately alive.”
- “This illness has taken so much from you, no more. I am on your side. I care about you.”
Lead with love and compassion
So, I am writing this article to create a call for COMPASSIONATE CARE of those who are suffering from Eating Disorders. If you are in a position of helping someone with an eating disorder as a medical professional or family member or friend, I beg you to do so with equal firmness and COMPASSION. I urge you to remember there is a loving, human soul behind the eating disorder who is NOT trying to be “difficult,” or hurt you.
I want to go back and hug the14-year-old me. I want to tell her she is not bad, she is sick. I want her to know that it’s okay to need help and not feel ashamed for it. I want someone to explain the monster she must face but she does not have to do it alone. I don’t know if it would have made a difference in the trajectory of my illness but it never hurts to lead with love and compassion.
Hello! My name is Juliana Winik. I am 25 years old and live in Canada. I am a mental health and Eating Disorder advocate in my community. I have battled Anorexia Nervosa for over a decade. Through my struggle I hope to use my voice to help others who are suffering by speaking out about my experiences. I am passionate about advocating for more education for physicians and other healthcare providers in hopes that Eating Disorders will be detected and evidence based interventions will be utilized sooner so that individuals who are suffering will have the best chance of beating this illness and will not have to suffer for a decade or a lifetime. When I am not advocating for Eating Disorders I work as a barista serving delicious coffee, and I spend my free time writing, listening to music/podcasts, being in nature, and spending quality time with my family and friends. I hope to pursue schooling and a career in nursing so I can give back in all the ways I have been helped by some incredible healthcare providers to whom I owe my life.
I was very moved by your story. You express so well the stigma and prejudice from others towards those of us afflicted through the disease of anorexia. I can’t believe that the lack of compassion and understanding still exists, despite the scientific information now available, proving anorexia is a genetic disease beyond the sufferer’s control. Back in the fifties when I had early teenage anorexia, even my own family disowned me, and the reputation for being ‘difficult’ ‘manipulative’ etc has followed me all my life. I am glad for you that your family is supportive, and understand it is the illness, not you, which manifests the behaviour. See my recent post ‘a Difficult Daughter’ or follow me at www.http://dinadavisauthor.com
Hi Juliana, I saw your story on a CTV London segment – unsure of when it was dated from, but it reminded me of an extremely difficult time in my life when I was effectively suffering from exercise anorexia. Between the ages of 27 and around 31, I compulsively worked out at the gym, primarily doing intense cardiovascular activity. At the peak of my illness, I was constantly hungry. One day it just dawned on me that perpetually having washboard abs and 5 or 6% bodyfat was not a sustainable pathway in life, and I focused more on being healthy rather than as small as I could be. I am now in my late 40s. I probably still at times fight with aspects of body dysmorphia, but I speak to someone regularly concering overall wellness, and I do discuss this topic from time to time. Sincere best wishes on your journey – Joe