For anyone that has ever watched anyone die of any type of a disease, you know how absolutely horrific it can be. To know that something is stronger then them, and even with significant help of modern medicine, they’re unable to fight it off or overcome it. To watch someone try and fight so hard for something, that in the end can takes their life, is beyond heartbreaking. To know that no matter how hard you try, or the resources you put in front of them, it’s nothing compared to what has overtaken them. A feeling of helplessness overtakes every part of you as watch the disease win.
It is through Mallory and Kayla’s stories that we are given the opportunity to learn from those who have walked this lonely path and bring forth awareness to our own words and actions regarding such matters. Because even though it may be possible that your child won’t directly deal with these diseases, there’s a good possibility that one of their friends may. After all, 1 out of 2 girls between the ages of 11 and 13 consider themselves overweight. By you being educated on these topics, you can have simple conversations with your kids, spouse, students, grandchildren, nieces and nephews – which in turns opens the door for conversation about a friend they may know that is struggling. This conversation plants a new seed that trickles down, making others around you more aware of what they’re saying regarding body image, while also being a support for their peers. You are planting the seed of knowledge, awareness and hope – which is something we need more of in this world. This isn’t something to be feared – for fear only closes the door of safety, leaving adults and children alike to feel even more isolated and alone.
When we choose to break down the barriers of these conversations, we open up room for something bigger, an opportunity to offer support and acceptance to others. I hope you are able to take from all of these entries, a new respect for those who have endured this disease themselves, as well as those who have stood on the other side – forced to watch those they love be overtaken by something, that while they thought they could control, only in turn, began to control them. Here are their stories.
My name is Angie Murphy and I would like to share with you our story of how an eating disorder turned our lives upside down. Anorexia Nervosa by definition is an emotional disorder characterized by an obsessive desire to lose weight by refusing to eat. This crippling disease took the life of our oldest child, Kayla, on July 13, 2013, 18 days before her 23rd birthday. Kayla was everything we could’ve asked for, she slept thru the first night home from the hospital, potty trained at 21 months, and learned to talk at a young age. As Kayla grew up she always appeared confident. She tried basketball, played in band and was even named Miss Kellogg. In doing all these things Kayla began to strive for perfection, which in time, we learned that perfectionism is or can be a starting point of an eating disorder. I remember her doing home work in 9th grade, she would be up all night re-writing things to make sure it was perfect. This perfectionism started to play a roll in her health, she would be up very late every night, not getting enough sleep, not eating properly, and always stressed out. We as parents, nor her teacher understood what was going on. We just thought she was concerned about getting good grades for college and was working way too hard to obtain them.
It was right before Kayla started 10th grade, that she made a comment about wanting to starting eating healthier. This wasn’t something that seemed alarming because we were always on the run and had a tendency to not always eat healthy. By January Kayla had lost a lot of weight, again we attributed it to the stress and anxiety from all her home work. My husband, Marty, said she needed to see a doctor to figure out what was going on. It was at this time the doctor diagnosed Kayla with an eating disorder and that some of her organs were in the beginning stages of organ failure. Our Doctor then referred us to Park Nicollet for admission to treatment. Kayla was so good about cooperating, but too far under the control of the eating disorder that she didn’t really understand how deadly this disease could be. But then again, none of us really did.
As we were going thru this whirl wind of facing the reality that our daughter has an eating disorder, we were so confused. My sister-in-law, Jean, also had an eating disorder (anorexia nervosa and bulimia), being that we didn’t live near her, we were never educated on the mental illness. Like so many others, we didn’t understand why she just couldn’t eat. Kayla and our son seen how the eating disorder would cause someone to act in such a self destructive manner. But because we were not educated on the mental illness none of us understood why it couldn’t be fixed. We didn’t understand the signs that had built up to the point of where Jean was at. This really goes to show you how naive we were to this mental illness. Eating disorders were something people didn’t talk about. That’s why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs.
When Kayla was admitted to Park Nicollet in the Twin Cities we were so scared. She was there for several weeks, but bound and determined to beat it! After inpatient and weeks of driving daily 180 miles round trip to the Twin Cities so she could do outpatient treatment, she had almost restored her weight and learned coping skills on how to fight off what is referred too as the eating disorders “voices”.
Between 10 and 12th grade Kayla worked with several psychologists, some helpful more helpful then others, but during this period home life was horrible. Between the four of us, I felt like I had to always be there to make everyone’s life better. My husband and son wanted to help, but that usually ended up in arguments. Being so naïve to the disease, we really didn’t know how best to help Kayla at home. Eating disorders are so difficult. Sometimes when you try to encourage them, you are actually feeding the disorder. The tension at home was an everyday occurrence. We are a very close family but there were days I didn’t know if we could continue to live together. Our son didn’t really say a lot, he watched, but I know it was very painful to see his sister go through this. Fighting this disease takes everything out of them and you.
Kayla was in and out of treatment several times over the four years she was in college. The most frustrating thing was when she turned 18 and legally became an adult. The doctors no longer had to tell us anything and Kayla could discharge herself from treatment when she wanted. She wanted to get better so bad but the voices were so strong that it was hard for her to always make decisions that were most beneficial for her overall health and well being.
There are only a few treatment centers in Minnesota and Wisconsin that work specifically with eating disorders. The problem at that time, was they were so inconsistent on treatment methods. Many would get the patient to a stable point and then release them to go home. There wasn’t much guidance on helping the patient and family find a qualified psychologist or psychiatrist. They didn’t teach you how to go grocery shopping or how to really cope outside the treatment center. There wasn’t family education centers or meetings like they have now, that help you better understand the disease, or support groups to speak to other families that are going through the same thing, for additional support.
I think my husband was more realistic about Kayla’s passing, he never said it, but always worried about losing her. I was always a little more optimistic. I spoke with Kayla everyday and she was always trying to fight the voices, reminding her to stay strong. We would search for new doctors to help in anyway possible. Because the disease was so strong on top of a genetic link, I didn’t think Kayla would ever really have a full recovery, but I never imaged it would take her at age 22.
We will never have the answers to understand why this happened. After Kayla passed we were amazed by how many people came forward and said if it wasn’t for Kayla and her story they wouldn’t be here today. Kayla was such a caring and giving person. She touched so many lives, and that is our inspiration. Through this whole journey she/we were never ashamed of what we were going through, so we will continue to tell her story and continue to reach out to help others that are also dealing with eating disorders. We will continue to help educate where we can, continue to help raise money for the National Eating Disorders Association and The Emily Program Foundation in the Twin Cities. Kayla lived by many sayings, but two of my favorites were – “be the best you can be today because tomorrow is not promised to any of us” and “we can stand still and watch, or we can stand strong and fight”.
Do you feel there are other driving factors that reinforce eating disorders aside from genetics?
Yes! Eating disorders aren’t the average dinner table conversation. Which is why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs. Eating disorders can show up for a variety of reasons, they aren’t just learned behaviors, it can be genetic, or how they are “wired”. I also believe society plays a big role in these types of diseases. There is a lot of pressure to be beautiful, to be thin, to be smart, and to be successful. This is a lot of pressure for our children at any age and I feel these are also triggers that start the process. Anxiety, depression, OCD and/or feeling as if they can’t measure up or aren’t good enough, can be some of the beginning signs of eating disorders or the onset of mental illness. As they grow and these issues and thought process strengthen, they start to control their life. We start to look for ways to find control in our lives and as a result, our body chemicals used for coping – diminish. This makes it the perfect time for an eating disorder to develop. What starts as having control over something, eventually begins to control you.
This isn’t just something that effects girls either, I do feel young boys are taught that they should have that perfect “10” for a girlfriend. This leads to a lot of bullying to those that don’t fit the bill or measure up to the standards that our society, communities and peers place. It is both genders that have this perception of being “perfect” in all realms. There are continually more boys/men that are being treated for eating disorders as well. We see this when we look at the pressure sports puts on our athletes. Telling them they need to be lighter to wrestle or leaner to run faster. It’s another aspect of their life they feel pressure from and one they may feel they have more control over. This plants a seed that weight is the driving force behind their performance. We, as a society, put attention in places where it’s least effective and needed, planting seeds that grow into something damaging. Which begins building forests of judgement and stigma around important and necessary issues such as these.This may not be something that affects everyone, but with millions suffering from eating disorders it is definitely something to be concerned and talked about.
Have you noticed an increase in education around Eating Disorders since Kayla was in treatment?
Yes, it’s getting there. They are now working on requiring teachers to be more educated on the signs that may lead to early detection of an eating disorder. Early high school age is a common time for eating disorders to develop but there is no age limit. Eating disorders have been diagnosed in children as young as five, but people such as Jean, who passed away from Anorexia Nervosa wasn’t diagnosed until she was in her late 20’s. Again, it starts with the conversation around it, just being more aware of it, asking more questions, and being advocates for each other – within the homes and the schools. We are gaining ground, slowly but surely.
*If you or anyone you know may struggle with a possible eating disorder, please know there is resources and help! Please contact any of the following
NEDA (National Eating Disorders Association) https://www.nationaleatingdisorders.org/find-help-support
The Emily Program at https://www.emilyprogram.com/locations/minnesota
Foundations such as these are vital in our communities to help others struggling with Eating Disorders. Just as we help fund many other research facilities, these programs are equally important and often don’t the attention they deserve, due to lack of awareness. Please consider donating to The Emily Program Foundation at https://app.etapestry.com/onlineforms/TheEmilyProgramFoundation/donate.html
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