I don’t know about you, but I sure wish I had the wisdom and experience I have now about 20 years ago! I so often realize what a blessing hindsight would have been if it had been foresight. No where does that statement ring truer than it does in relation to our son’s eating disorder.
Eating disorders affect the entire family. They put stress on the person suffering with the symptoms, on siblings, close friends, and certainly on parents. Marriages are often put to the test as the parents struggle to determine the best
way of helping their child. Whether or not to force treatment can be a very tough decision and one that often causes disagreement between the parents. Eating disorders are often insidious and by the time everyone recognizes them for what they are, things are often fairly far advanced. There can be many reasons for this. In my family it was because there was not a “typical” presentation. The symptoms of the actual eating disorder started several years before the serious weight loss began. The roots had a chance to get in very deep before we all recognized the seriousness of it. Denial sometimes plays a role as well. Our son was very good at hiding what he was doing and we were equally good at trying not to see it. Continue reading When Mom and Dad Disagree
There was a time when I would have said that an eating disorder affected primarily the person with the actual eating disorder. I was not ignorant of the fact that families and friends were sure to be impacted, but I truly underestimated how much so. As a mom, I have to say that I did not anticipate the impact that my son’s eating disorder would have on his brothers and sisters. I wish I had had hindsight as foresight in this instance. Continue reading Collateral Damage
A post I wrote at the beginning of the year about New Year’s resolutions for moms starting me thinking. The post talked about how difficult the media hype about New Year’s resolutions can be for our children and others suffering with eating disorders. In it I talked about some alternative resolutions involving self-care that were outside of the standard dieting and exercise which was all over the TV and radio during the months of December and January. After I wrote the “resolutions” post, I began thinking about the idea of self care. What does that really mean? It is thrown around so casually these days, almost like “how are you?” How many people really answer that question with honesty? How many people really ask it and want an honest answer? It is really just a greeting that has an expected and socially acceptable response. I noticed recently how often people that I don’t even know very well end a conversation with phrases like: “take good care”, “take care of yourself”, and “take it easy”. It seems to me to be a bit like opening a conversation with ‘how are you’? Those phrases ending a conversation really don’t have much meaning anymore. They have become a routine way to end a conversation. Continue reading What does self-care mean anyway?
Recently I wrote a blog post titled, “I Am Not My Brother”. In this post I described my daughter’s two year quest to find a diagnosis for her symptoms and how she was forced to live in the shadow of her brother’s eating disorder. The post described the difficulties our family had getting a diagnosis of anorexia for her brother who very nearly died of the disease and how our daughter was virtually accused of being an anorexic by most of the doctors who examined her, and yet, she turned out to have an autoimmune disease, not an eating disorder. In this post I wondered how far we have really come in recognizing that eating disorders are not the disease of teenage girls.
I recently received a phone call from a very old and dear friend that rekindled my suspicion and my disappointment that much education is still needed and the stereotype of the typical “eating disorder patient” is alive and well. Continue reading Benign Neglect?
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.
Published on www.Stigmafighters.com February 1, 2017
Of all of the ups and downs we have experienced with our son’s illness; the hospitalization and the setbacks, one of the hardest is hearing my son apologize for his condition. A recent experience really brought to light for me just how much my son feels he has to apologize for his eating disorder. It is as if he is saying, ” I have an eating disorder, please accept me and love me anyway.” It is as if he should be grateful that anyone could care for him and want him as a friend or a spouse. It is almost as if his illness made him undeserving of those things and that he is lucky if someone feels differently. It makes him either hide it altogether or feel that he has to tell it right away so people can decide whether he is worth befriending. What a choice! As a mom, this was very hard to watch. Our son is not his illness. Continue reading You Are Not Your Eating Disorder
I remember my statistics classes from high school and college. I don’t really remember them with any fondness, but I do remember the good ‘ole bell curve. I used to look at all of those dots clumped into the center of that bell curve. All snug and close together, some right on top of each other. They were the popular
dots, I used to laugh. The poor little dots at the beginning or the end of the curve were the outliers. They were those dots that didn’t fit the norm. They were scattered around at the ends and there generally were not very many of them. Continue reading An Eating Disorder Outlier
A setback or relapse was always my worst fear. What if he gets as sick as he did when he was hospitalized? What if it takes us all by surprise again? What if I wait too long again? How will he manage to live a normal life if he keeps having setbacks? What if people find out? How will I manage to see him in so much pain again? All of those “what ifs” can be haunting and paralyzing. I would manage to do fine during the day when I was busy, but when bedtime came, my mind raced. Even during the day I worried about every little thing that seemed
out of the ordinary. I scrutinized my son with the eye of a police detective.
All of those fears are normal. How would any parent, close relative, or significant other feel after experiencing the trauma that an eating disorder can levy. I say trauma because it is just that, at least the first time through. It takes its toll on everyone involved. We were collectively affected as a family and, at the same time, each of us was affected in our own unique way. As a mom, it left that “mother’s radar” constantly in the “on” position. It became impossible to relax and it made it hard not to over react to every little thing. Continue reading Eating Disorder Setbacks
The holidays are over now and I talked about supporting your child through the maze of New Year’s Resolutions in my last post. This time I would like to talk about New Year’s Resolutions for moms. Chances are that if you have a child or close family member with an eating disorder, your personal resolution isn’t going to be related to dieting and exercise. That doesn’t mean that because you have a child with an eating disorder you are forbidden to attend to your own needs regarding nutrition and exercise. That is another post though. Today, I am going to talk about some resolutions that relate to reducing stress.
I have never personally been that much into New Year’s Resolutions. Perhaps it
is because I have yet to keep one for more than a week, but whatever the reason, I just don’t like them. I find that they mainly add something to my already crazy schedule and are a recipe for failure. Moms who are taking care of a child with an eating disorder or anyone caring for a close loved one likely is stressed and tired by the time January 1st arrives. The holidays are stressful whether good or bad and when special meal planning, travelling, and the irregular schedules add to the already chaotic nature of the season, it is tiring. That sigh of relief that all of the “triggers” are reduced and schedules and routines have returned to normal is met with the fact that schedules and routines have returned to normal, especially yours. This means back to work, back to preparing kids for school, back to driving to after school activities, and back to organizing and running a busy household. It still means planning those meals to fit the specific needs of your child with the eating disorder and it still means worrying because you are a mom. It might also mean that you feel you haven’t had a break. Continue reading Eating Disorders and New Year’s Resolutions for Moms
It is that “resolution” time of the year. I have been hearing the commercials advertising our two favorite New Year’s resolutions: weight loss and exercise. Those dreaded twins that make themselves very front and center in our minds after nearly a month of holiday feasting. Families dealing with eating disorders know those resolutions all year long and the extra attention around the New Year is not welcome. It seems like that breath you let out after getting through the holidays (hopefully with success, but certainly with additional knowledge and experience) is met with another hurtle in the form of the New Year’s resolutions. Just this week alone, I have seen or heard over 15 commercials for gym memberships, weight loss programs, and personal trainers. That doesn’t even include the ads on Pinterest, Magazines, pop-ups, etc., that talk about Paleo diets, Adkins Diets, low carbs, no carbs, more protein, less protein, ketogenic, raw/vegetable based diets, and the list goes on and on. I honestly think that this hurtle can be sometimes worse than the holidays. Like the holidays though, we have to talk about it and about what we are going to do to counter this if it is a trigger for our child. The good news is that while the desire for a “healthier” lifestyle is met with much enthusiasm at the beginning of the year, it doesn’t last long. The pace of our lives is so busy that I think adding one more burden, in this case a trip to the gym after work or heading over to Weight Watchers or Jenny Craig, is just one additional chore in a work week that is already too busy. The resolutions themselves are not necessarily bad, but jumping from 0 to 60 might just be a little too much. By the end of January, most of the diet and exercise talk is about done, or at least back to its normal obsessional level. Does that month seem like a year though? I know it could to me! Because my son was so focused on exercise, the gym memberships, the HIT (high intensity training) videos, the personal trainers, etc., were very much a trigger for him during this period. Food was too. Last year “intermittent fasting” was all over the internet and it was coupled with exercise first thing in the morning to ensure optimal health. Continue reading Eating Disorders and New Year’s Resolutions