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.
Thank you for sharing your story.
During our treatment, we had someone share with us that he believed in medical school GP’s only receive a couple of days of learning about eating disorders. I don’t know if this is true. But it’s frustrating that eating disorders are sometimes not recognized early on by GP’s – lack of weight gain, lack of increase on growth curve, delayed menstruation. It seems like these are sometimes over looked and phrased as everyone grows differently. Which is true. But looking back, I also wish that the lack of growth in my daughter would have been noticed. I wonder what would have happened if an eating disorder had been on our radar before it took hold. In a book i read it said if the possibility of an eating disorder is there – act now and don’t wait until it’s obvious. But you don’t know what you don’t know and eating disorders are sneaky. Exactly as you said, preventing it is so much easier.
I am glad your daughter is doing well! Sending her much love as she continues her recovery journey.
Thank you for sharing. 🙂
I think a couple of days is optimistic. I think most GPs get only a couple of hours at most, and what they do learn isn’t up to date a lot of times either.
I took my daughter age 14 to see a GP in March 2021 because she looked pale, she has blue/grey nail beds, cold hands and she seemed to be only wanting to to eat ‘healthy’ foods.
The GP weighed and heighted her, took bloods and told me all was within normal range.
I knew she had lost weight, but her weight still fell within a normal range for her age although she had dropped about 10kg.
Then she collapsed on October 2021 with low blood pressure and although weight still within the low side of normal for her age, she was very malnourished.
I have since learnt that a body does not need to be skeletal to have an eating disorder.
A persons weight can still plot within what is classed as a normal range but they can have an Eating disorder.
Sadly my local services do not recognise this
Once you have a child diagnosed it seems atrocious that general practitioners are so unaware.
Exercise, especially running, can mask the ED from low heart (athletic) rate to frame etc.
So much more to be done…
On top, even if you get an ED diagnosis, many children are Pans/Pandas induced restriction that general practitioners don’t recognise.
Mamas know when something doesn’t feel right with there kids despite tests that often look otherwise…
Follow the Mama gut!
Thank you for the post – all coaches, especially high school should read your post. Running can be detrimental to growth years.
Our family doctor missed my daughter’s anorexia when she was 18. She even went as far as saying “i don’t think you have an eating disorder” without ever doing a physical exam. At that point my daughter was restricting, over-exercising and her resting heart rate was plummeting. We spent 6 months in a very dark place during her re-feeding but with the help of FBT, emotion coaching, a very experienced dietician and private counselling my daughter is feeding herself again. The road to recovery is long and not linear. The best advice I can pass on is to be present with your child even if they are now adults, be calm even when you want to scream, and encourage your child to not isolate themselves. Eating disorders love to isolate their hosts. My daughter is so much more than her eating disorder and I will be vigilant and on the lookout to support her if ED tries to make another move on her.
What are the eating disorder personality risk factors? Thank you for sharing
Generally the high achieving perfectionist or the empath/super feeler are the types that seem to most often develop eating disorders.
Your daughter’s story is similar to my daughter, not only was she given contraceptive pill to initiate her periods she was also given thyroid replacement medication because she had hypothyroidism which also results from anorexia nervosa. I recall providing my GP reliable evidence based information about amenorrhea and hypothyroidism related to AN and it was dismissed. My daughter has been living with AN for 15 years, has not had her periods and is taking the same two medications. It’s disheartening.
My daughter was diagnosed in Nov 21. She was an elite gymnast and a county athletic finalist. Age 12. I was devastated and for a long time blamed myself for not seeing it sooner. It was masked by healthy eating options which I was all for and as a family we also did lots of exercise at home and running at weekends. To be fair my GP diagnosed her at our first appointment and made a referral to the eating disorder specialist team. After a dark few months we managed to get her to start gaining weight and she was weight restored by April 22. We felt in a good place and that we were moving in the right direction – she started back her sports at school and then started competing and winning medals, then it snowballed again, she hit a brick wall started loosing weight again and suddenly we were spiralling backwards. She lost 10% of her body weight and we had to stop all sports again. This summer has been awful, as she can’t do sport she paces all day everyday and we physically can’t stop her. Her weight has started to move up but her mind is really intrenched with negative eating disorder thoughts. So we continue our battle against this hideous disease. I just wanted to say to all parents out there whose daughters are really sporty or athletic do not let them back to sports or competing too soon. I wished we had held back and done it much more slowly in line with her mental recovery and not just her physical weight. I know this now.