When one takes aim at a system of privilege, some jump to the conclusion that you hate the people who stand to gain from that system and have no compassion for their struggles. Caregivers can make it hard on themselves and on the patient. They give twenty four hours a day seven days a week looking after people in severe episode. They neglect their own health. They grow weary and cross from all their over-involvement.
Our DBSA chapter feels that caregivers need their own place where they can talk about their issues and we have provided one. We do not tell them what they can and can’t talk about. We do not ask them to support certain laws or advocate for changes that they do not want. We don’t have a patient monitor the group to be sure that they act according to some unbearable standard of political correctness — people need to vent. We shelter them from people who may have an ax to grind (I have heard about other groups where caregivers were roasted over hot coals by angry patients) and who don’t appreciate how hard it is. We encourage them to talk to peers who know what it is like. We always ask them how they are feeling when they come to our patient-family support groups, reminding them that they, too, are important. We feel that their mental and physical health is as important as the patient’s and we tell them so.
I’ve been hit with some innuendo from some online caregivers who imply that I don’t care about the mentally ill. What I believe they are really saying is that I don’t care about caregivers. I do. It aches when I see a caregiver overburdened and I do my best to relieve that. Many have been the times when I have had a couple in a group and told the patient that she or he needs to realize that her or his manic state of mind is creating an extremely stressful environment for her or his spouse. How does this make me a foe of caregivers? I think much of the misapprehension stems from my opposition to Murphy’s Law, which I have explained at length elsewhere. It scares caregivers to hear me talk about sane privilege– just like it scares white people when we are talking about black people — where we who live with mental illness are left out of decisions about our treatment.
Every now and then, someone comes into one of the support groups I attend or encounters me online and talks about how their family has decided to apply tough love. They are not alcoholics nor do they use illicit drugs. The parents or spouse are reacting to symptoms — usually the lack of motivation to exercise, take care of themselves, etc. The helplessness of the patient does not matter to them. They may not understand that it takes time to recover from a mood disorder or they may deny its existence. If you’re now taking medication, you should be better now, right? Or maybe they think it is time that you “got out into the real world”, suffered what “everyone” else suffers.
So they apply a philosophy that they heard about — maybe from friends, maybe from a therapist, maybe from Bill Milliken’s 1968 book or one of the many self-help guides that have replicated the idea which is called Tough Love. At its best, it is merely setting good boundaries — “sorry, but if you are going to use the money I give you for food to buy street drugs, I am not going to subsidize you”. But in American culture, it too often means employing cruelty to be “kind” whenever the patient doesn’t act in a way that the caregiver doesn’t like. And many caregivers make the mistake of thinking that the symptoms of the disease are something that the patient can control. You are depressed, they might reason, because you don’t exercise You are sleeping all day because you are a lazy good for nothing.
When they apply tough love in this situation, they are abdicating their responsibilities as a parent or a spouse. First of these is to understand the illness. Psychiatrists, for example, see the lack of motivation to exercise less as a cause than as a symptom. Studies show that exercise doesn’t do a lot to pull people out of depressions. A systematic review of the literature on exercise’s effect on depression found:
Exercise is moderately more effective than no therapy for reducing symptoms of depression.
Exercise is no more effective than antidepressants for reducing symptoms of depression, although this conclusion is based on a small number of studies.
Exercise is no more effective than psychological therapies for reducing symptoms of depression, although this conclusion is based on small number of studies.
The reviewers also note that when only high-quality studies were included, the difference between exercise and no therapy is less conclusive.
Attendance rates for exercise treatments ranged from 50% to 100%.
The evidence about whether exercise for depression improves quality of life is inconclusive.