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.

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