In my reading through support groups, articles, and just listening to the “chatter”, so to speak, in eating disorder circles, I hear more and more about advocacy.  I think that advocacy is very beneficial and I am in full support of most types of eating disorder advocacy.  I support advocacy for improved education, the elimination of the calculation of BMI’s, and certainly the overall advocacy of the elimination of the stigma of mental illness to name a few.

What I have been reading lately is advocacy in the form of yelling at store clerks for making a suggestion to use a product with less sugar to restore electrolytes, at a healthcare professional for using the term “empty calories”, at a waitress for asking if dessert would be desired after the meal or commenting that the meal must have been good because the plate is “clean”.   I have also recently seen a push to have restaurants stop posting nutrition information in the menu section and also on the labels of food packages.

It is easy to understand where this is coming from and in certain cases I agree with the action taken.  It is coming from the fact that a very stressed out caregiver is scared to death that the comment, nutrition information, etc., might trigger their child or loved one and start a relapse or simply speed up the relapse already in progress.  The reality is also that the caregiver doing the admonishing was as triggered as the person suffering from the eating disorder.  I have been there many times.

Triggers are those things that remind us of something unpleasant, and in many cases, make us feel as if we are right back in that time and place again.  They are things that we see or hear (sometimes other senses can be involved as well) which causes us to, in the case of eating disorders, have doubts about our methods of recovery or even if we should recover, cause an increase in urges to act on eating disorder behaviors, negatively impact our body image, etc.  They focus the minds of eating disorder sufferers back to thoughts and behaviors which were/are harmful.  They are similar in some ways to a flashback.  Sometimes this can catalyze a relapse.

Triggers are not unique to those suffering from eating disorders.  Caregivers can be triggered as well.  Seeing someone dressed in running clothes or driving by where a 5K is in progress makes my entire body tense.  My daughter has a medical illness that has caused her to have difficulty maintaining her weight (see “I am not my Brother”) and when she tells me that she is having difficulty eating due to nausea, etc., my anxiety level soars before I ever realize it has left the ground.  All reason seems to leave my mind without so much as a wave or even a whisper that it is going; my first clue comes simply when it is gone and I am pouncing on her about an eating disorder she doesn’t have.

There are really few of us in this world that don’t have “triggers” related to something.  There are triggers for those suffering from trauma, PTSD, addiction, physical illness, care-giving to elderly parents, spouses, or other relatives with other medical conditions.  There is no limit to the number of reasons a person could be “triggered” by something.

As caregivers we have to be in tune with those things that might trigger our child with the eating disorder, but we also need to be in touch with what triggers us as well.   My approach to triggers, especially with my son, was to panic, try to avoid whatever that trigger was, and wring my hands……….hardly an effective strategy for either of us. I quickly decided that this wasn’t going to work out well and had to think about how I wanted to handle this; what was going to work best for our family?  I thought about advocacy.  There was a real push, at that time, to get certain restaurants to stop publishing the nutrition information on their menu right as you walk through the door.  Not a bad thing to advocate for, but what was I going to do about the comments from doctors, relatives, restaurant staff, pharmacists, and the literally hundreds of comments he would hear and things he would see.  Was I going to follow him around for the rest of his life chastising everyone with whom he came in contact for saying the “wrong thing” to him?  Was I going to teach him that erasing every possible trigger related to eating disorders from this earth would make everything alright and make him recover?  Aside from the ridiculousness of that idea, it also wouldn’t solve anything.  Eating disorders are like germs.  Every time we think that we have them defeated, they find new ways to defeat the antibiotics we are using to kill them.  The eating disorder will always find a way to remind our loved ones that it is still there.  Taking away any and all possible triggers isn’t going to stop the eating disorder.  Oh, there are definitely some things that should and could be done to minimize some of the suffering that those afflicted with eating disorders endure.  We can do that, but my point is that we can never eradicate all of the possible triggers that are out there no matter how many times we yell at the store clerk, pharmacist, insensitive relative, etc.  We can remove all nutrition information from every restaurant and every piece of packaged food, but I am not sure that we should or even that it would make very much difference.  There are people that need that information.  Some changes could be made in how we present the calorie portion, but heart patients may need to know how much saturated fat is in their food and the sugar and carbohydrate portions are relevant to diabetics.

So what did I decide to do? I realized that it was impossible to eliminate triggers.  If he was going to go to college, get a job, and eventually go out and live on his own or have a family, he was going to have to learn to deal with triggers.  I wouldn’t be there to follow him around and handle it for him forever. I also realized that having both of us anticipating them and terrified of them all the time was far from a winning strategy.  It was becoming somewhat of a self fulfilling prophecy.  We needed to face this head-on and take the power out of the hands of the eating disorder and place it back into our own.  I decided to talk about it with my son, our family, and our outpatient therapist.  I decided that what I wanted and hoped for him was that he developed a sense of self (I know I use that phrase often, but it is so important to learn at an early age) so that he could identify what triggers were individual to him and a strategy to cope with them.  That is just what we did.  With the help of our outpatient team we were able to explore what things were big triggers, medium triggers, and small triggers.  The big triggers for our son generally revolved around exercise:  gyms, running, excessive talk at work, school, or parties about getting in shape or working out, and feeling he didn’t work hard enough.  He also had a difficult time with calorie information right in his face.  Strategies were developed for him which included avoiding gyms altogether.  He also avoided those restaurants where calorie information was prominently displayed.  He worked with his therapist about politely changing the subject surrounding uncomfortable subjects or avoiding those situations where he knew they would occur.  Because his OCD factored into this heavily, he was referred to an OCD specialist where he learned some tools to improve his distress tolerance and to manage the OCD symptoms.  They worked on ways to avoid, for now, those big triggers, and how best to manage encountering those medium and small triggers.  Most of all, the plan was individual to his circumstances and needs.  He learned how to anticipate triggers and prepare for them and to advocate for himself.  He practiced how to speak up in a way that was comfortable for him and in keeping with his personality style.  This helped him to be more in tune with his own needs and feelings and also empowered him to reduce the intensity of the reaction to the particular trigger.  We have a plan in place for when things do become overwhelming and he needs someone to help him regain perspective.  It isn’t perfect, but is helping.

For caregivers, we need to do many of the same things.  We need to be able to identify our own personal triggers.  It can be helpful for us to work with a therapist as well to identify what triggers high rates of anxiety and depression for us.  Caregivers often experience those triggers as a “flashback” of sorts or maybe not of sorts, just plain flashback.  It is important that we learn ways to cope with these experiences also.  Caregivers also need that “sense of self” and the ability to identify what will “trigger” us and what tools we can use to help ourselves through it.  We also need to be able to anticipate and prepare for those times when we know we will be overwhelmed by memories of a horribly frightening and depressing time in our life and, not only what coping skills we can use to help us through, but who we can call or what to do when we can’t.  What is the crisis plan?  (See “Crisis Plan for Caregivers”).  We need to take that element of surprise and fear right out of the hands of the eating disorder, who plays it so well, and face it head-on and equipped with our plan, not the eating disorders.  It won’t be perfect, but nothing is and it doesn’t have to be perfect to be effective.

Then and Now

I guess every generation looks back at the time in which they grew up and compares it to the generation of today and the challenges that their children face growing up in the here and now.  Many look back with nostalgia and see their time as a better time.  Each generation generally sees the one before it as more simple and a “better” time.  I don’t really look back on my generation as necessarily better or worse than any other generation.  I guess that is really an individual assessment.  Each generation has its challenges and wouldn’t it be nice if we could pull only the good things from every generation and the advancement in technologies that it brings and leave the bad behind?  That isn’t the reality, though; we take the good with the bad. Continue reading Then and Now

A Crisis Plan for Caregivers

Have you ever found yourself unable to get out of bed or going back to bed once your husband and kids have left for work and school, not getting up again until they return?  Are you crying all the time and finding the smallest tasks completely overwhelming?  Do you find little very little enjoyment and even more difficult to laugh?  Are you having thoughts that your family would be better off if you were just not here anymore?  These are the thoughts and symptoms of someone who is in crisis.  There are many more that could be added to this list, but you get the point.  At this moment the crisis is happening whether realized or not.  There were many warning signs that a crisis was coming though; signs that probably were going on for a long time and either ignored, pushed aside, or maybe just thought of as normal, but they weren’t. Those signs could have come in many forms.  It may have been sleeplessness, high anxiety, or irritability.  It may have been that you lost pleasure in things you used to look forward to doing.  Perhaps you started refusing opportunities to get together with friends or relatives.  Or maybe you noticed that your body ached all the time.  Frequent headaches and stomachaches may have left you unable to go to work and you have used a lot of sick time.  Maybe nothing looked the same to you anymore; colors didn’t seem as bright and nothing in your landscape seemed inviting or interesting any longer.  Does it feel like your situation simply has no end? This is by no means an exhaustive list, but they are all warning signs that you are becoming depleted or even depressed.  They are all red flags that a crisis may be coming. Continue reading A Crisis Plan for Caregivers


I remember that first Memorial Day weekend when we were recognizing that our son had something seriously wrong.  The weather was beautiful and I had bought flowers for the garden.  My anxiety level was high that morning as it had been for quite some time.  In my heart I had known for a very long time that a problem existed, but there was always an explanation and, for a long time, the symptoms waxed and waned. Food wasn’t really involved yet either, just exercise.  I was still at that point where I thought logical arguments would win the day.  That morning, though, I remember how edgy I felt.  Despite the beautiful colors of the flowers, they just didn’t look very bright to me.  The sun didn’t look the same to me and even the warmth of the sun felt different.   Continue reading Summer

Support Groups: In-Person, On-Line, or Both?

Support groups have become much more available for eating disorder sufferers and their families.  Most families can find a support group within a reasonable driving distance from their home and, of course, with technology exploding as it is, they are available on-line too.  I am an advocate of support groups because I think that they are a very valuable addition to the care of the entire family.  I am focusing my attention primarily on the groups for caregivers of eating disorder sufferers in this post. Continue reading Support Groups: In-Person, On-Line, or Both?

Factoring the Internet into Your Self-Care Plan

You wake up to the sound of the birds chirping and the morning air smells fresh and clean.  As the cobwebs clear the anxiety builds. Will he eat today?  Will there be a constant fight about food?

Your heart is racing.  Your mind is racing.  That headache you have has been there for nearly a week and nothing seems to completely relieve it.   Your stomach is in knots every time you sit down to a meal.  You feel sick to your stomach when you wake up in the morning and that feeling starts building; that feeling that something is wrong, something bad is about to happen.  Every muscle in your body seems to just ache and you didn’t do anything strenuous.  You can’t stop thinking about that article you read last night.  It was about… guessed it….eating disorders.  It wasn’t reassuring either.  The one that you read several days ago made you feel guilty because it was critical of something that you were doing and actually had found helpful.  The one you read last week gave some great ideas based on some new research, but how will you incorporate them and how will you ever keep up with all of the new information out there.   And then there was my poor support group member; what if what happened to her child happens to mine?  What if I don’t respond quickly enough and she thinks that I don’t care? The chest pain builds again and this time you feel dizzy too.  Should you tell someone? Could this really be a heart attack this time?  Continue reading Factoring the Internet into Your Self-Care Plan

Why I Don’t Feel Guilty About Being Different Anymore

Those relatives and friends that know me well also know that I do not subscribe to the philosophy of one size fits all or that there is only one approach to treatment or that following the latest trend or research is the only right thing to do.  I don’t believe that with regard to most areas of my life and I didn’t believe it or follow it when dealing with my son’s eating disorder. 

Does that mean that I am a maverick and don’t follow any of it?  Definitely not!  Certainly there are standards and absolutes.  The latest research has clearly defined that strep throat is a bacterial infection and antibiotics are the cure.  This has been pretty well demonstrated and when my doctor tells me that my children have strep throat and prescribes penicillin or some other antibiotic I don’t argue for something different. That is only one example of many. Continue reading Why I Don’t Feel Guilty About Being Different Anymore

Helping Heal Those Guilty Feelings

Guilt is something that most of us experience at some point in our lives.   As parents and caregivers it seems to be an emotion with which we become quite well acquainted.  That has certainly been my observation when looking at other parents/loved ones in the support groups to which I have belonged and it was certainly the case with myself.

The onset of my son’s illness was very insidious and he was quite adept at hiding it.  As I have stated in other posts though, we were also quite adept at not wanting to see it.  The signs were there and the truth is that I didn’t see them until the eating disorder had gotten quite a firm hold on him.  I waited too long and, for that, I carried a great deal of guilt.  Continue reading Helping Heal Those Guilty Feelings

Duped Again?

One of the side effects of parenting a child with an eating disorder was that I started seeing eating disorders everywhere.  I suddenly found myself labeling all food related behavior that was odd, unusual, or different in any way as eating disorder behavior.  Whether it was dinner with a friend who ordered a salad with dressing on the side or anyone in the “Organics” section at the supermarket, I found fault with it.  Was I really suddenly an expert at diagnosing eating disorder behaviors or was I really angry and afraid?  While I am certainly more in tune with what eating disorder behavior looks like and my radar is definitely high when it comes to anything related to eating disorders, the truth is that I was angry and afraid.  I was not alone either.  I heard the same kind of statements in the support groups I belonged to.  I would hear people comment that cutting back on processed food or sugar was really eating disorder behavior in disguise.  I would hear people criticize everything from training for a particular sport, vegetarianism, cutting back on desserts, to ordering dressing on the side and everything in between.  Continue reading Duped Again?

A Nutritional Lobotomy?

That is exactly what I felt I would need to undergo after our son discharged from inpatient treatment.  Our world turned upside down when our son became ill with an eating disorder.  The shock,  the anger, the disorientation, and of course, the guilt.  Did I do something to cause this to happen?  Could I have prevented this?

Our journey through treatment has had its ups and downs.  There have been setbacks, but there has been real growth for our entire family in many areas.  We have tried many different strategies and have received mostly really good advice.  Sometimes, though, things have been said that just didn’t make sense to me.   They seemed to defy the principle of common sense in my mind.  I am not a particularly rigid person.  I do not subscribe to the philosophy of one size fits all in the realm of eating disorder treatment or anything else.  Eating disorders are very complicated and throughout our journey we incorporated aspects of many treatment modalities, used a variety of strategies based on research past and present, and also used a very large dose of common sense.  All of this has been within the framework and guidance of our treatment providers. Continue reading A Nutritional Lobotomy?