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.
There have been setbacks. We have seen a return to over-exercising, rigidity with food choices, postponing dinner until late at night, delaying breakfast until lunchtime, and skipping lunch altogether. We have been through periods of fear where weight gain lead to calorie restriction and we have seen periods of weight loss. The most reassuring thing I can say about all of these things is that they have not risen to the level of my worst fears. I am armed with something that I was not armed with before: experience and knowledge. I should also add support in there as well. I have been through the worst case scenario already. We have gone through malnutrition, dangerously low heart rates, and hospitalization. We have been there and done and I know more today than I did yesterday.
While we have had setbacks, we weren’t blindsided again. The setbacks were a bit insidious at times, but not really that hard to spot. They were predictable. Stressful events, good or bad, are likely to trigger symptoms. The difference this time is that we dealt with it quickly and directly. At first, I would panic when I saw anything out of the ordinary. I would either want to hide from it or I would go way overboard in addressing it. Now I have learned to deal with much less intensity. I have learned not to give the eating disorder so much power. There is help available, and if setbacks occur, they can be managed and they don’t signify failure. No one failed, not our son and not his family. It is simply a setback, period.
Positive things can come out of a setback. Sometimes setbacks do require more intensive treatment in the form of Intensive Outpatient, Partial Hospitalization, or even inpatient hospitalization. Many times, though, they are able to be managed at the outpatient level of care. Setbacks can give us very valuable knowledge about where we are vulnerable and what our triggers are. I am referring to moms and caregivers as well because we are vulnerable and can be triggered also. They help us to better understand and refine what is working and what needs more attention. They provide valuable information to our treatment team as they work with us to identify what events, thoughts, fears, etc., helped fuel the setback. They provide us with opportunities to improve communication with our loved ones and with our treatment team.
A relapse isn’t a reset back to the beginning. You can’t go back to the beginning again. You have taken too many steps forward and know too much now. You have been there and you have the benefit of experience and wisdom you didn’t have that first time. It can’t be the same. You are always heading forward. You might take some backward steps at times, but if your follow your footsteps you will see that you never went back to the beginning and you won’t. This is true of your loved one and of yourself.
Setbacks generally don’t blindside the same way, we often see them coming and recognize them earlier. They can give us confidence when we successfully deal with them. Most importantly, the more that everyone involved deals openly, honestly, and aggressively with setbacks the more likely that they will decrease in frequency and severity. I can’t guarantee that there will never be another setback, but I have learned so much since we first started on this journey. Now, if we see something, we say something. We don’t hide and we don’t panic in the same way. If I do panic, it isn’t so intense and isn’t as paralyzing. Here are a few tips for dealing with setbacks that I hope might be helpful:
If you see something, say something: If you are concerned that you are seeing a return to some eating disorder behaviors, talk about it. Be open with him/her about what you are observing.
Choose a time to talk when you are not feeling panicked: Talking when you are panicked isn’t likely to facilitate an open, honest conversation. He/she will sense your panic and may not be forthcoming with what is really going on for fear of worrying you. It is also much harder to listen and to think clearly when we are panicked. Take some space and approach the subject when you are less anxious.
Reassure him/her that you will take charge if needed: Reassure your son/daughter that there is a lot of help available and that you will intervene if necessary. Children, especially, can feel reassured when they know that there is a confident adult willing to step in if necessary. There can also be reassurance in knowing that there are people watching out for you (parents, relatives, treatment providers, etc.) and that they are not alone.
Bring your concerns to your treatment providers: Bring your concerns to your treatment providers early. They will be the best judge of whether or not there is really something to be worried about and they can address it professionally.
Don’t isolate yourself: Seek supportive people. This could be family, friends, or support groups. Any or all can be a great source of comfort and support during this time.
Remember that setback isn’t failure: Setback is simply that, a setback. It isn’t a return to that place where you were in the beginning. It can be managed and everyone will be in recovery again. It isn’t your fault or anyone’s fault. Be gentle with yourself just the same way that you are gentle with your loved one suffering the symptoms.
Be encouraging: It isn’t always easy to feel encouraged when you are watching him/her struggling with a relapse. Encouragement doesn’t mean being disingenuous or a cheerleader. It is just maintaining an atmosphere of confidence that he/she will come through this and will reset back to the recovery mode again.
Keep a journal: It is helpful for those closest to the person with the eating disorder to also keep a journal of observations and feelings before and during a relapse or setback. Bring the journal to individual or to family therapy. This can be a very effective tool to identify things that may have helped trigger the setback and provide some valuable insights in many areas.
Remind yourself that you will not go back to the “beginning” again: A setback or relapse is part of the journey, but you are still moving. It is like climbing a long set of steps. You will sometimes climb up several steps and then go backward a few, but you are still moving forward. You are not going back to the bottom of the staircase. We learn something from each setback and we continue to climb the stairs. We have too much knowledge and experience to go all the way back to the bottom of the staircase again.
Remind yourself that you will not be hit from behind again: You won’t again have that same experience of being hit from behind, blindsided, of being caught unprepared. You are not in that same place any longer. You have experience that you didn’t have that first time. Trust that you will recognize the warning signs this time.