When my daughter was 15 she was in a very small body, but she was also a competitive runner, and surrounded by her long-distance running peers, she didn’t appear to be underweight. Everyone always said how fabulous she looked and if I ever said that she looked too thin, family and friends would say she just had a very petite build. She ate regularly and even though she was quite particular about what she ate, we thought that was good because they were “healthy” choices. Of course, healthy choices and large energy expenditure meant that as puberty came and went her weight stayed about the same rather than increased, so there was no significant weight loss and she was still eating, so no one noticed.
When she turned 16 I took her to our family General Practitioner because she had not started menstruation. The GP told me my daughter probably didn’t have her period because of her low weight and that was common in runners. I was told not to worry as long as she had her period in the next few years it would be fine, come back when she is 17.
So at 17 I took her back to the GP. I was told amenorrhoea caused by low weight is a diagnosis of exclusion, so we needed to check nothing else was causing her amenorrhea before they could give that diagnosis. At that stage unfortunately alarm bells should have been ringing loudly in my head but the world of eating disorders was one I had no knowledge of. An ultrasound and blood tests were conducted. They were normal so we waited till final school exams were done before investigating further.
When my daughter was almost 18 we were referred to an endocrinologist and my daughter had more blood tests than I ever knew existed, every disorder possible was tested for and she even had an MRI to exclude a pituitary tumour – they were all normal.
On our final visit to the endocrinologist to discuss the test results he told us the reason my daughter had never had a period was because she was a long-distance athlete, and her body was reacting like it was running from a lion in famine – his exact words. So, I simply asked does that mean she just needs to run less and eat more? He looked at my daughter and said, no she doesn’t look underweight to be a long-distance runner (he had never weighed her). Then he asked my daughter, exact words again, you don’t want to put any weight on, you need to be light to run, right? Of course, she said she didn’t want to gain weight. So, he prescribed her the pill to see if that could trigger menstruation.
It was another 6 months before an eating disorder was diagnosed thanks to a sports physician who was treating my daughter for an injury who alerted us to the problem. Then things went from bad to worse and it was clear to everyone there was a serious problem. Now I had medical professionals telling me that she had an an eating disorder and I had to take it very seriously due to the high morbidity rate. The roller coaster had begun, psychologists, psychiatrists, dieticians, medication (lots of medication), psychiatric hospital, FBT etc. etc. My world was flipped. I thought we might lose her a few times; as you all know, it’s terrifying.
My daughter is now weight restored (not fully recovered yet but doing well) and she isn’t petite, she was never supposed to be that small. In fact, she grew 3cm and went up a shoe size after her 19th birthday, so her growth had effectively been stunted by her eating disorder.
Unfortunately, I was naive then and had no idea what was in store for us. It’s been nearly 4 years since that appointment with the endocrinologist and I wish I had the knowledge I have now. In hindsight when my daughter was 16 and I began the conversation with the GP alarm bells should have been ringing in the GP’s head, an assessment for an eating disorder should have been done then instead of referrals to specialists and costly and time-consuming tests. Perhaps increasing food intake and decreasing exercise should have been the initial advice. I think we could have caught the eating disorder early before it had 2-3 years to really take hold. Maybe she didn’t even have an eating disorder in the beginning, but an eating disorder assessment would have highlighted that my daughter has so many eating disorder personality risk factors and those risk factors combined with a sport known to have high rates of eating disorders would mean we had to really monitor her closely and perhaps encourage other sports and activities. We could have stopped the eating disorder at the door and worked on prevention rather than cure.