Every fall since my daughter, Ellen, finished chemotherapy treatments for leukemia, she's had an annual checkup with a post-cancer health care team at the Fargo hospital where she received treatment.
The prospect of going to Ellen’s annual checkups is unsettling for her – and for her dad, Brian, her two brothers, Brendan and Thomas, and for me, as I suspect it is for many people who have had a life-threatening illness or have had a close relationship with someone who has had one.
Though the five of us have witnessed how healthy Ellen is, “What if her leukemia has returned?” pops into my mind when I schedule the annual appointment. I say a prayer of thanks when her blood work comes back negative and when her physical checkup is positive.
Last fall, Ellen’s pediatric cancer physician came back to the examination room after checking her blood work. He had a serious look on his face. I felt my heart drop to my stomach; Ellen also had paled.
What the doctor said next wasn’t what I feared – that her cancer had returned. However, what he said didn’t ease my fears, either. Ellen had a life-threatening illness of another kind – an eating disorder that had resulted in a weight drop of 15 pounds during the past six months. She also had anemia and heart irregularities.
Brian and I knew that Ellen has lost weight, but we attributed it to her serious commitment to training before and during cross country season. We also had observed she looked thin, but we didn’t know that her 5’ 7 1/2" frame was only carrying 115 pounds.
Ellen’s doctor talked to her during the appointment about how being so thin is damaging her health. She said it could result in death if she didn’t address the eating disorder and gain some weight.
For the first time in the 10 years since Ellen had her initial post-cancer checkup, I left the doctor’s office feeling worse than when I had arrived.
On the way home, I asked Ellen whether she had been trying to lose weight, and she said that she had not. Instead, she said she tried to eat only small portions of nutrient-dense foods, such as fruits, vegetables and peanut butter sandwiches as per her 2019 New Year’s resolution to eat healthy.
Though what the doctor told Ellen initially was a shock and scared her, in a way it also made her relieved because it took the pressure off of her to only eat healthy foods. It also gave her the OK to increase her calorie intake.
During the past six months, Ellen, driven personality that she has, has redirected her energy toward eating more calories and including a daily snack or piece of dessert. She’s gained about 10 pounds and added a half inch to her height.
It hasn't been an easy road for Ellen, and she continues to struggle with body image and seeing herself as too heavy when she looks in the mirror. Meanwhile, she sometimes has major guilt after she eats a snack or dessert; the feelings take away from the enjoyment of eating it. Then she beats herself up for feeling guilty.
Brian and I encourage Ellen to talk about any emotions she experiences and we assure her that she’s not alone in her diagnosis. We don’t think there’s anything wrong with her for feeling the way she does.
Ellen also is talking to a psychologist who specializes in eating disorders. Although Brian and I can empathize with our daughter, we don’t have the skills to give her professional advice and to help her develop the skills she needs to meet these challenges. Ellen intellectually knows what she needs to do, but the psychological part is difficult to deal with.
As her mom, one of things I have tried to do is to assure Ellen that she is not alone in fighting a battle with mental illness and that everyone has some type of personal emotional challenge, whether we can see it or not.
Ellen wanted me to write about her eating disorder because May is National Mental Health Month. Her only concern is that she doesn't want what I write to elicit sympathy from readers. Instead, she hopes to help them better understand the challenges of mental illness.
In Ellen’s own words: “It is OK not to be OK. We need to shed light on mental health issues, so people who struggle can receive the help they need.”
Ann Bailey is a reporter for the Grand Forks Herald.