There are several parallels between Anorexia Nervosa (AN) and cancer. Both diseases are severe and potentially fatal – the mortality rate of AN is similar to that of the most common form of childhood leukemia. Both can become chronic illnesses characterized by periods of remission and periods of relapse. Early, aggressive intervention is crucial in the treatment of AN as well as the treatment of cancer. Both diseases will grow and metastasize if left unchecked. Neither cancer nor AN is the patient’s choice or the parents’ fault. Chemotherapy is an aversive, painful treatment with unwanted side effects. The same can be said of re-feeding and weight restoration in AN – it is extremely anxiety provoking and difficult for the patient, yet it is necessary in order to eradicate the disease. Patients with AN, like patients with cancer, require a tremendous amount of help and support from caregivers for long periods of time.
Blogger Cameron Von St. James, the husband of Mesothelioma survivor Heather Von St. James, wrote the following essay about caring for his wife during her battle with cancer. I think it may resonate with caregivers of patients with AN.
The Hardest Battle Of Our Lives
by Cameron Von St. James
When my wife and I walked into that doctor’s office on November 21, 2005, we didn’t realize that our lives were about to change forever. Until then, we were your average couple. We both worked full-time jobs and had welcomed our first and only child into the world just 3 months prior. As we sat in the doctor’s office together, we watched our lives transform into a chaos and uncertainty before our very eyes. The doctor read the diagnosis: malignant pleural mesothelioma. Cancer, and an extremely deadly one at that. I knew we were in for a long, difficult struggle.
The doctor told us about treatment options. We could go to a local university hospital, a regional hospital that didn’t even have a specialist to deal with my wife’s form of cancer, or Dr. David Sugarbaker in Boston, a renowned specialist in the treatment of mesothelioma. My wife couldn’t even answer, she was so shocked and terrified. She turned to me as if to cry for help. I answered her silent plea by telling the doctor, “Get us to Boston!” That decision turned out to be one of the most important I’ve ever made in my life.
Being a caregiver my wife was extremely taxing and difficult, but it’s a job that I knew I had to do to the best of my ability. I knew I had to be strong for her and be her rock. Inside, though, my life was in turmoil. My wife had to quit her job and required more and more care each day. As a result, I was working full-time, taking care of our infant daughter, and also taking care of my beloved wife too, whisking her to one doctor appointment after another, making travel arrangements to Boston, and making her comfortable at home. It was a full schedule and there were so many times when I felt like giving up, but I knew I needed to press on.
During this time, I dealt with a multitude of fears that will never leave me. Medical bills piled up. I watched the love of my life endure pain and sickness that no one should ever have to endure. I feared what would happen to our daughter if my wife didn’t survive through this. Would she have to spend the rest of her life without a mother? And with a father that was broke because of all the medical bills? It was the hardest, most painful time I’ve ever lived through, and more than once the stress and pressure forced me to the ground in tears. I had bad days, but I never let my wife see my in my moments of weakness. I knew that she needed me to be strong, and I did my best to give her that.
After months of surgery, radiation and chemotherapy treatments, Heather is cancer-free. She beat mesothelioma against all odds, and I am so proud of her. Two years after her diagnosis, I enrolled in school full-time to study Information Technology. I graduated with honors and am thankful to have been given the stage to give the speech at my graduation. It was there that I was able to see the lessons I learned and communicate my gratitude for the fact that my wife had beat cancer.
My own lessons stay with me even today. I learned that I’m strong enough to take care of someone I love, even if it is scary and often painful. I learned to use my own stubbornness to work to my advantage. Most importantly, I learned that time is precious to us all and we should spend it with the people we love so much. It’s seven years later and Heather is cancer free, and we continue to raise our beautiful daughter with the lessons we both learned. It is our hope that our story of triumph over cancer can inspire others in their own battles.
I know people say that having an eating disorder isn’t a choice, but I can’t help but feel like I had some say in developing one. Would I really choose to go down that road if I had known that 20 years later I’d still have an ED, probably not, but I can’t help but think that I had some role in making a decision to have an ED. I feel like there’s no one else to point fingers at. I’m the one who started cutting calories, working out more, weighing myself a gazillion times a day, etc. Obviously, no one would wish to have cancer, but I’m not so sure that’s the case with EDS. (I think those who do wish to have one are just looking to lose weight and don’t really realize what they’re all about). I don’t really know what I’m trying to say here, but maybe it’s that I feel like I’m the one to blame for my ED because I went down that road. Do I really have control over things that I do because of it, that I’m not so sure about.
PTC,
You are not to blame for your ED. No one is to blame for their ED. Yes, you engaged in some behaviors that triggered the onset of your ED, such as dieting and exercising, but so do 90% of females. The vast majority of them do not develop EDs. Dieting, eating healthfully, exercising, and monitoring your weight are considered positive, health-promoting behaviors by most people, including most physicians. So you were doing what everyone told you to do – things that were considered good for you.
People with OCD choose to use hand sanitizer and wash their hands after using the bathroom. These health-promoting behaviors can lead to OCD in those who are genetically vulnerable. This does not mean that they choose to have OCD.
People who say they wish they had “a little anorexia” don’t know what they’re talking about. As you said, what these people mean is that they’d like to lose a little weight or they’d like to be able to forgo their favorite foods once in a while.
So only 10% of people develop EDs? That’s nuts. I feel like the percentage would be much greater than that.
I often have the discussion about choice with my T. She likes to tell me that I have a choice to weigh myself, work out excessively, restrict, etc. My argument to that is that sometimes the need to do something, like weigh myself, doesn’t feel like a choice because the need to do it is so strong. That probably wasn’t the best example, but the two of us had this choice conversation a lot a few months ago. I think I probably then argued that if it’s my choice to not eat, etc., then it was my choice to have an ED.
I can also see the other side of it, sort of. I guess I wouldn’t really chose this way to live. I would rather be normal. I feel like I’m much more “normal” than I use to be, which is a good thing.
This blog is fantastic. Thank you! Might we post you as one of our favorite resources on our site? Keep up the great work!
~Laurie Searle
http://www.FightEatingDisorders.org
ComingOutOfTheRefrigerator@gmail.com
Laurie,
Yes, please feel free to post my blog on your site!