Those were the words of my daughter over and over again during the course of nearly two years. After her brother was in recovery for about six months our oldest daughter started developing strange symptoms. She would often complain of feeling full and bloated. She would complain that she felt nauseous much of the time as well. At first I thought that it was anxiety related to what our family had been through over the previous 3 years, but her symptoms persisted. She
was eating well and I changed her diet around multiple times at the recommendation of our doctor, taking out dairy, gluten free, reducing sugar, etc. This was often a tricky business because while I was doing this with her, I had to be careful that our son wasn’t triggered, and if he was, to address it.
Even with the dietary changes our daughter continued to experience these symptoms and began losing a fairly significant amount of weight, so we took her to the doctor again. We had been with the same practice for many years, so these doctors were acutely aware of our son’s eating disorder. As she was examined, the question of anorexia was broached. My daughter expected this question because of the weight loss and also because of her brother. She carefully explained that she had been eating well and that she did not over exercise (Of note, the exercise question was almost never asked, she volunteered it). She stated very clearly that she did not have an eating disorder and I backed her up. She didn’t have an eating disorder.
After the lab work was back and no explanation for her symptoms could be found, she was referred to the GYN with the explanation that her symptoms were probably hormonal. This didn’t seem to me to explain the weight loss, but off to the GYN we went. After taking her history, she was weighed and measured. Her weight was low and the expected question came again. And again, she explained what she ate and that she was actually afraid to exercise because she was losing weight and she didn’t know why. Lab work was done and a prescription for hormone regulation given. This was to no avail. Her symptoms persisted and the hormone adjustments were making things worse instead of better.
An insurance change forced us to a different GYN who repeated the labs and asked her if she was sure that she wasn’t anorexic. She patiently explained why this was not the case and I again backed her up. More prescriptions to adjust her hormones did nothing to relieve the symptoms. We found ourselves back at the general practitioners office where we started and, yet again, the possibility of anorexia revisited. This time I was frustrated and offered that her lab work would, at this point, be suggesting something that would indicate that she was malnourished. We were referred to the GYN and back we went. In the meantime, we saw another doctor where I suggested a referral to a GI specialist but was simply redirected back to the GYN where more prescriptions were given and no symptom relief occurred.
It would take nearly two years to finally get a GI doctor who agreed that there was really something wrong and, no, it wasn’t anorexia. The GI doctor working with her was one of only two doctors (and we saw several) who did not assume anorexia, or worse, that she was just too in touch with her body (yes, this was actually suggested!). The rest of the doctors we saw immediately jumped to anorexia almost before examining her.
I wondered why anorexia was almost immediately suspected with our daughter and we couldn’t have wrestled that diagnosis out of anyone for our son, who nearly lost his life to it. Are women really treated differently? Are we so conditioned to suspect an eating disorder with every young female that loses weight that we fail to see the individual? While I don’t believe it is done out of malice, I do think that there is some truth to that. I think that as the epidemic of eating disorders is recognized, physicians are more tuned in to asking about it during their examinations, but I am not sure how much education is given in actually recognizing the symptoms and what additional tests should be done in the office and/or ordered to confirm or dismiss any suspicions. My experience tells me that the radar guns are still definitely aimed at young females. Our son was so obviously anorexic and we couldn’t get some of these same doctors to call it an eating disorder, and yet, it was just about the first question from nearly every doctor who saw our daughter. Her answer was very often treated with skepticism, but very simple things that could have been done to help determine if there should be concern were not done. Even when I pointed out that her lab work was normal and that she didn’t have the temporal wasting common with anorexia, she was looked at suspiciously. That same suspicion was not cast on our son whose blood work literally screamed anemia as it was flowing into the vial. My son had a low heart rate, temporal wasting, orthostatic blood pressure and pulse changes, wildly abnormal labs, and still he was a “jock” and an “athlete” that had just taken it a bit too far. I had to ask for the sitting and standing blood pressure and pulses with my daughter and when there were no changes, ‘she might have an eating disorder’ was still the most common response.
The other reason that suspicion was cast on my daughter was the fact that it was known that her brother did have anorexia. I understood this and fully expected the question. So did my daughter. She said it best though when telling me one night, in tears, that she was tired of being treated as “her brother’s sister”, and therefore, his medical twin. She was tired of not being believed and she was tired of being in his medical and psychiatric shadow. She was tired of saying, “I am not my brother.” It was very frustrating, as her mother, to see that there really is a difference in how eating disorders are viewed with men vs women even now.
Her presentation was a tough one to diagnose and I am in no way “doctor bashing”. Her doctors were doing their best to understand her symptoms and find their cause. I was not at all offended that anorexia would be considered as a possibility. It was something that I considered briefly, except that I lived with her and saw how she ate and behaved. Having said that, I would be dishonest if I didn’t say that I see there is still a great need for education among general practitioners, pediatricians, etc. The symptoms of eating disorders in males vs females needs to be more clearly understood because they can be different. There were only two doctors among the many that we saw who examined my daughter and truly listened to her. These two doctors looked at the entire picture: the presentation, the history, and the labs. They looked for symptoms such as blood pressure changes, pulse changes, and some other markers of eating disorders that were absent in her case. They let her tell them what had been going on and, most of all, they listened! They listened with attention. They were not just formulating their next response in their head while letting her talk, but they listened to understand and there is a big difference between these two types of listening. These two doctors knew what to look for with regard to eating disorders and moved on when no evidence was present.
I have learned so much between my experience with our son’s illness and this experience with our daughter. I think that things are catching up, but there is still some work to do regarding education about eating disorders. They are still largely thought of as the “teenage girls” disorder. This leaves males very under-diagnosed. Even beyond that I found that this also leaves women who might be thin, or even underweight, immediately suspected of having an eating disorder when there might really be something else going on. It is a question that should be asked and evaluated when someone presents as my daughter did. There should also be proper education as to how and when eating disorders are diagnosed and that seems to still be lacking in many areas. I would advise any parent whose child is suspected to have an eating disorder to ask the treating physician if they are educated in the diagnosis of eating disorders. If they are unsure or you are unsure, ask for a referral to someone who has a specialty in diagnosing and treating eating disorders. It should never be insulting to respectfully ask a physician if he is trained and comfortable diagnosing this condition. Eating disorders are tricky and often very insidious. You are there to advocate for your child and it is OK to do that. As it turned out, our daughter does not have anorexia. An autoimmune liver condition is responsible for her symptoms. She loves and supports her brother, but she is not her brother and it was painful to have spent two years swept up in the shadow of his eating disorder.