It is hard to care for a child with mental illness. But for those supporting an adult child suffering from mental illness the task is exponentially more difficult: there are administrative and privacy and legal hassles, there is the wear and tear of chronicity, and the world is likely to be telling you to "let go."
Parents with adult patients in their care are stuck in a limbo of parenting without the rights of a parent, locked in perennial negotiation with an illness that is not likely to respond logically or in the person's best interests.
As a longtime mental health advocate I have seen the larger mental health world pretty much ignore eating disorders, and ED advocacy has until recently opted out of the larger mental health advocacy picture.
So, it is with enthusiasm and hope that I share this survey out of NAMI, a leading US mental health advocacy organization, looking for responses from US caregivers of adults.
If we want change, and we want to be considered in the mental health arena, we as families need to step up whereever we can to be counted and to be heard. This survey is one of those opportunities, and passed on to me by another wonderful parent advocate, Joan Riederer of the Erin Riederer Foundation.