I think that one of the hardest things for me as a mother of a child with an eating disorder is the anxiety that it will happen again. The fear that my son will become sick to the degree he was when first hospitalized is always present in my mind. It is like a guest that never leaves. The other fear is that it will happen to one of my other children. Those fears could be consuming at times. My other children will tell you that I was unbearable to eat with. I didn’t mean to be, but it really was true. My eyes were constantly scanning the plates on the table and observing my children’s mealtime behavior every night at dinner. Was there excessive pickiness? Why was this child not hungry tonight? Why didn’t this child eat the carbohydrates? Why was dessert being refused? Why was water requested to drink instead of milk? By the time the meal was over, we all had indigestion! It didn’t stop at meals either. I monitored exercise too. If any of my children decided to embark on an exercise program or became really enthusiastic about sports, it was met with raised eyebrows and anxious questions about motives. It certainly couldn’t be undertaken without a talk about excessive exercise and increasing calories to compensate for that exercise. If they didn’t have an eating disorder after I was finished with them they probably never would.
My oldest son, who had the eating disorder, felt my anxiety all the time. I watched everything he did. Meals were very anxiety provoking and I watched every bite he took from the corner of my eye. He couldn’t walk down the street without my feeling panicked about how many calories he was burning. I was constantly on edge every time that he had an outpatient appointment. I anxiously waited for him to come home and tell me what his weight was. Had he lost weight? Were his labs normal? In my son’s case, there was some reason for concern as he still does struggle with his eating disorder. My anxiety was stifling though.
Despite thinking that I was keeping my anxiety to myself, it was wearing on everyone including me. The real question probably should be why I had the delusion that I was keeping my anxiety to myself. It was very evident to everyone in my family. It was like having a flashback whenever I would see one of Max’s brothers and sisters lifting weights, eating differently, or running down the street. I would freeze and be catapulted back to those days when my son was very sick and I would helplessly watch him do those very activities.
I realized when one of my sons was in tears after going for a run because of my questions and anxiety at this activity that things had to change. Not just my son who actually had the eating disorder, but all of my children were being stifled by my anxiety. My oldest couldn’t grow and recover at his pace. It was impossible for him to learn how to manage his eating disorder if I was always doing it for him. Furthermore, he could never feel successful and “in recovery” if I was always reminding him of his illness. He had a very competent treatment team and I was involved in that treatment with him. We were involved as a family in our son’s treatment. In working with his treatment team, I would learn how to manage my own anxiety and fears.
It is hard for a parent to see one of their children suffering. Once you have experienced nearly losing your child that anxiety never really leaves. It can be managed though. Letting go is hard, but is what has been required for all of us to move on and grow personally and as a family. It was only through letting go that I found a much stronger grip and much more peace. I have learned a few things along the way and hope that they are helpful to others also struggling:
- Remember that you will never be back in that same place you started: I am not saying that there cannot be setbacks which may even involve hospitalization, but you won’t be back in that place you were when it all began. You are armed with something that you didn’t have then: Hindsight and knowledge. You are much more educated than you were when the illness first began. This illness cannot ever sneak up on you again. It won’t ever again take you by surprise. You will recognize a relapse quickly and you will be armed with knowledge and resources this time.
- Trust your treatment providers: You are no longer the only set of eyes on your loved one. His/her treatment providers are watching carefully for signs of relapse. Weight is being monitored, coping strategies are taught, and lab work is being monitored.
- Become part of the Treatment Team: Parents of minor children are already part of the treatment usually through family therapy or meetings with the treatment to update progress. Families of adult children or other adults can encourage their loved one to allow you to participate in treatment. This can be in the form of family/collateral therapies or other types of updates that might be recommended. This will allow you to not only participate in treatment, but also to express any concerns you might have.
- Join a support group: Being part of a support group for families and friends can go a long way in helping quiet that anxiety. Sharing your worries, your experiences, ideas, and coping strategies is a very good way to support your loved one and support yourself.
- Find a therapist for yourself: The family member with the eating disorder isn’t the only one who could benefit from therapy. If you find that your anxiety is interfering with your life or even if it is just uncomfortable, getting your own therapist might be very helpful. A very wise woman once told me that one of the most effective ways of treating a child is to treat the parent. That doesn’t mean that the parent is sick, or ineffective, it simply means that helping the parent cope with the child’s condition often goes a long way in helping the child. I would venture a guess that this applies not only to circumstances where the identified patient is a child.
- Be honest about your anxiety: That doesn’t mean you have to tell 500 of your closest friends or post it on social media, but a trusted friend or two would probably love to listen and feel honored that you shared your anxiety with them. Choosing someone who has a calming effect on you is important. The friend who always thinks the sky is falling probably isn’t the best choice for this conversation.
- Remember to take a break: The instructions on an airplane are for mom/caregiver to take the oxygen first in the event of an emergency. Why? Because you cannot take care of a child or someone in your care if you aren’t taking care of yourself first. If you are exhausted and run down, you cannot be an effective caregiver. Find activities that rejuvenate you. Take a walk or go to the movies. You cannot be home “watching” all the time. The activity isn’t important, just that it is relaxing and enjoyable.
- Remember that setback isn’t failure: There will likely be setbacks from time to time. Setbacks for your loved one and even setbacks for the caregiver. We are human. A setback isn’t a failure and it doesn’t place us back at square one. We can’t go back to square one again (remember tip #1). A setback is scary and sometimes depressing, but we learn something new every time we have one. That knowledge we gain makes us much more effective in preventing or lessening the severity of any future setbacks.
- Remember that sometimes a cigar is just a cigar: Not every run down the street, refusal of dessert, or request for water at dinner is a setback or the warning signal of a new eating disorder in another child. Sometimes the explanation is really all there is to it. You will know the warning signs if they are there. Your instincts will tell you when something is wrong. Resist the irresistible urge to pounce every time you hear those words or see that behavior that triggers that flashback and that anxiety. You will not risk anyone’s health by waiting just a little bit to evaluate whether or not it is a pattern. You know the signs, you will recognize them very quickly.
- If you see something, say something: Be proactive. If you see a pattern starting or your instincts tell you that something just isn’t right, contact the treatment team. They will be able to tell you if there really is a problem and they will be able to address it before it gets out of hand. Sometimes just knowing that there is someone you can call for help is enough to keep the anxiety in check.
- Keep communication open: Keeping the lines of communication open can often keep anxiety from becoming overwhelming. Talk to your loved one about how they are feeling and about how you are feeling. Encourage openness when urges to act on eating disorder symptoms occur and have a plan for dealing with them. Work with your treatment team to develop a plan and a healthy ways to communicate.
- Keep a Journal – Keep a journal of your thoughts, especially when you anxious. Noting how you were feeling, things that were going on at the time you became anxious, and an account of your interactions during your “anxiety attack” can e very helpful. Sometimes just writing about it calms the anxiety and provides some insight and clarity. This is also a good thing to share with your therapist if you are working with one. Artists: drawing how you are feeling is an excellent outlet as well.All of these strategies helped me to quell that anxiety and allow all of us to breathe again. It isn’t always easy and that monkey can very quickly get on my back and panic begins. I cannot stress enough that trust in your treatment team is essential. A good treatment team often consisting of a psychiatrist, therapist, and nutritionist are worth their weight in gold. Always follow their advice first because they know your loved one and the particular circumstances of your family.