Caregiving is HARD. Even in the best of circumstances, it is terrifying and exhausting to have a loved one mentally unwell, especially one’s child. Even with early intervention, quick remission, and plenty of time and support I’ve never met the family that reported: “well, that was easier than I thought it would be!”
As fellow caregivers, we all want to be supportive, encouraging, cheer for the hard work and offer encouragement and hope. We KNOW how hard it is. We KNOW that a positive outcome is not a given. In our community, we know that recovery is hard and not a measure of how good or how hard a family works. Not all situations lead to recovery. Most situations are complex. Some situations are unremitting, unrelenting, protracted, and far too many end in tragic outcomes.
In our community, it is not uncommon to hear from a parent who instead of feeling encouraged and inspired by all the messages of hope they feel unwelcome, shamed, or filled with envy.
It’s a double bind: those who aren’t seeing progress tend to stay silent. That leaves others like them feeling unseen and alone.
I don’t know how to solve the problem of that reflex to be encouraging and to post successes in these journeys. I wouldn’t want to be a community that responded to the distress of others with further discouragement: I have been in that community.
When I entered the world of eating disorders, in 2002, it was not an encouraging world for parents. It was expected that we parents would blame ourselves for our children’s eating disorders. We were expected to be contrite, to be grateful to all services and providers. To apologize, and to accept.
We were not supposed to be empowered, to complain, or to question. In fact, any negative emotion except toward ourselves was considered evidence of our being “the problem.” It was considered selfish, un-parental, and deluded, to think that we were needed or wanted in the treatment process.
I don’t want to go back to a time when the welcome to a parent community was depressing, discouraging, and enforced the idea that we should “take care of YOU” because our distress was part of the problem. I do not want to go back to the “look within” for the reason our loved one was ill. It would be dangerous to return to an attitude that parents need to simply accept what the system and our ill loved ones allow us to know, and do.
But we also need to think carefully about taking care of those among us who are currently in pain. Those whose struggle is long, and complex. These are parents who not only do not need more advice: they know their situation and the whole field better than any of us. Those fortunate enough to have seen earlier remission and lasting recovery don’t need to recommend our experience to those who did not share it. We need to listen. We need to support their struggle, and ask what they want.
In a personal relationship, we can gauge our responses and we can balance the need to listen with our impulse to be helpful. On a large forum, we all tend to simply repeat what we wanted to hear, and what we feel was most helpful to ourselves. All we have, really, is our own experience. It is important to resist telling others what to do, or to assume they need what we needed. To listen. To witness the pain of others with humility. I am reminded, daily, of the power of our voices but also the power of just letting people be heard.