Recently, I came to the realization that I need to exercise and start taking care of my own body. The truth is that this realization should have come a long time ago, and probably did, but was ignored. The “why” it was ignored is significant and points out how much this miserable affliction has held our entire family hostage, but none more so than mom and dad, the primary caregivers or carers. It is not the fault of our son and it is not our fault either, it is an unintended consequence of our concern and fear. I am quite sure that many of my readers can relate.
It was at a visit to my doctor that I was advised to get back to exercising. Prior to my son’s illness I had loved walking my dogs and biking. At the word exercise my heart sank. Exercise?!! Seriously… in my house? There was no way. It would totally trigger my son who over exercised to the degree that it nearly killed him. It was simply not possible I told myself.
Several months passed and I didn’t even think of following my doctor’s advice. It was while writing the post on New Year’s Resolutions that I began rethinking this. I was annoyed at the time that all I was hearing on any type of media was advertisements for exercise and dieting. Neither of those words is bad in and of themselves, but the idea that a perfect body is what makes us desirable is offensive. The constant barrage of New Year’s Resolutions, I knew, would be difficult for my son. While writing that post I was also thinking about the fact that, New Year’s aside, there are reasons that people would want to exercise and even need to lose weight. What happens in a family where there is someone suffering from an eating disorder? Does this mean that everyone in the family is sentenced to the exercise restrictions that he/she has? What kind of example does that set if so? The food and supplements are my son’s medicine, if you will, and the lack of exercise is a health restriction. If he had a heart condition would the rest of the family also take his medication and adopt the restrictions prescribed by his doctor? The answer, of course, is obvious. The reason that this is less obvious with Eating Disorders is that they are so often not viewed as an illness. They are widely viewed as either well within the control of the sufferer who is being “manipulative” or the sufferer is completely lacking self-control. Either way, it is behavioral. The reality is that Eating Disorders are illnesses and the prescription, among other things, is exercise restrictions and dietary changes. This is the prescription for the person with the Eating Disorder, not the entire family.
While coming to this conclusion a couple of things jumped out at me. The first was that I was very triggered by the word “exercise”. I could feel my heart start racing when I saw TV shows or commercials depicting people exercising, especially running. Talking about it would also produce the same reaction. Even the thought of walking my dogs brought back the very unpleasant memory of seeing the skeletal image of my son running by me as he ran his daily 10 miles. Yes, caregivers can get triggered. We can be catapulted back in time with a single word, image, sound, or smell. We react with aversion, anxiety, depression, or fear at reminders of the trauma of nearly losing our child or loved one.
The second thing that jumped out at me was that, once again, I was giving the eating disorder power that it did not deserve. I do not have an eating disorder and the rest of my children do not either. Tiptoeing around Mr. Eating Disorder (this is a reference to the eating disorder, not my son) and placing the same restrictions that my son has on everyone in the family is unfair. It places the eating disorder in charge and it gives it exactly what it wants; the ability to call the shots and set the rules. It makes us all dance to its tune. Giving that power to this illness almost seemed to me to make it larger than life. It seemed to be all anyone could think of when they viewed my son. Everything seemed to revolve around the eating disorder. It became the first thing we thought of when any decisions or plans were made. My son is not his illness and it was at that moment I realized, again, that I needed to establish boundaries and limits with the eating disorder. It would not, like a virus, be allowed to infect everyone in our home.
I am certainly not advocating insensitivity nor have I totally gone off my trolley and suddenly failed to realize that eating disorders do change things and that they do require special care. There will never be another day in my life when I am not painfully aware of the damage that they do and the fact that they are a lifelong struggle. My “mother’s radar” will never again turn off as I know that relapse is always a possibility. That said, there had to be a middle ground. My son will likely have a lifelong struggle with this illness. That would be the case if he had a heart condition, diabetes, or any number of illnesses. He will live his life seeing people exercise and diet for all manner of reasons. He will have to learn how to deal with those triggers and though I would love to do it for him and make it all OK, I can’t. Teaching him that he is the only one with needs and that the needs of others should not also be met is not a lesson I want him to learn. As moms and parents we gladly put our own needs aside to care for our children, but this has to also be tempered with common sense. There was a period when he first came out of the hospital where we avoided exercising and the things that we knew would trigger him because he was very vulnerable. As hinted at the beginning of this post, this went on for a fairly long period of time, perhaps too long. This was necessary at that time, but the overall goal is not to make the entire family behave as if we have eating disorders, it is to reduce, and hopefully eliminate, his eating disorder behaviors. His life isn’t going to be filled with people who take his “prescription” for his illness just so that they can avoid upsetting him and having his family do this indefinitely isn’t, in my opinion, going to serve him well. What we can do; however, is to be supportive, encouraging, and sensitive to his needs and still meet our own needs.
We were very fortunate to have a therapist working with our family who was very adamant that a family walking on eggshells was not a recipe for success. She helped keep things in perspective and was always there to deal with difficulties that arose along the way. Below are some suggestions/tips I have picked up through the experience of our team and through personal experience. I hope that they can be of some help to others as well.
Talk with your treatment team before you begin: Talk with your treatment team about the family’s approach to exercise and diet before you embark on something new. They know your family and will make recommendations based on your individual circumstances. Sometimes a family therapy session is recommended so that everyone can discuss the subject with the help of the therapist. This also ensures that everyone has heard the same thing and is on the same page with the plan. You can also make the request for a family session.
Be sensitive and low key: Exercise restrictions are hard on those suffering with eating disorders. You don’t have to hide the fact that you exercise, but it doesn’t have to be run up the flagpole either. Be sensitive and refrain from talking about how your workout went. Consider going to the gym on your way to or from work or some other activity to avoid making a special trip that is announced before you leave. If your child or loved one becomes overly focused on your exercise routine or plans, change the subject. If this isn’t successful, tell him/her they are becoming too focused on the subject and suggest revisiting it another time.
Talk honestly about feelings: That is his/hers and everyone in the family. Be open to listening to and identifying difficulties that arise. Keep communication open.
Keep a journal: Keeping a journal yourself and encouraging your child/loved one and even the rest of the family to do the same can be a very helpful tool. Write down feelings and difficulties that arise. Bring them to your therapy sessions. This provides your treatment team with very valuable information and helps them to assist you with the recovery process.
Be open to revising your plans: Recovery is a process and many revisions are made along the way. This is no different. Open and honest communication may point out the need to revise the way things are being handled. Working together on revisions can help reduce the frustration. If you have a treatment team they should be instrumental in helping revise the plan.
Exercise did become part of our lives again. It even became part of my son’s life again, but the moderation part is always a struggle for him. Exercise wasn’t thrown in his face, but it wasn’t hidden either. No one made a production of going to the gym; it was just done and was worked into our schedules so that it didn’t stand out as much. Oftentimes, he didn’t even know we went. When I walked the dogs though, I didn’t sneak in and out of the house. I just behaved as I did before he got sick. I put the leashes on and started walking. No announcement or production was made about it, but I wasn’t hiding with the dogs in the bushes if he walked by the window either. I will not say that it was without difficulty or that it was always easy for him or for us. Frustrations did creep in. I will say that it got easier for all of us as time went on. When it caused our son discomfort or triggered him, we talked openly and honestly about it. We did our best to be understanding and sympathetic instead of frustrated and if a new plan needed to be formulated, we made a new plan. Things were fluid. It wasn’t perfect, but nothing ever is. It won’t be perfect when he is living on his own and dealing with what the world throws his way either and I suppose that will be an entirely new chapter and worry in our lives when it comes. We will just have to keep taking one day at a time.