This is an article about a very important topic I refer to often, but have not gone into it as deeply as Faith does here in this post. There is a glaring lack of an infrastructure of care to support alternatives. People cannot make meaningful choices without one. What can we do about that? This article was first posted on Mad in America and printed here with permission from the author.
By Faith Rhyne
Many people are all too aware of the shortcomings of our current mental health system. Depending on factors of economic privilege and cultural prejudice, people experience those shortcomings differently and are impacted by them with varying degrees of severity and significance. To psychiatric human rights activists, the mental health system is a cruel and harmful abuse of power for the sake of social control and corporate profit. For many workers within the system, it is a frustrating regimen of paperwork, policies, and feeling ineffectual in what one is able to do within the scope of a bi-weekly check-in.
Often, for service users, in many ways the mental health system is simply an inaccessible insult, with scant appointments, callous and fatigued providers, and treatments that seem to cause more problems than they solve.
While many have been helped by various individuals within the mental health system, people who went above and beyond their role as “staff” and approached their work with a genuine commitment to humanity; the mental health system has tragically failed a great many more, often in ways resulting in desperation, diminished potential, alienation and, all too frequently, untimely and avoidable death, often by suicide.
In a recent article featured in O Magazine, in which radical mental health activist Jacks McNamara spoke about community support and alternative wellness, reporter Alissa Quart mused in closing that intentionally structured community support networks may be the “wave of the future” considering the failure of our public service system and social culture to meet even our most basic human needs for support.
However, the challenges of community support are many.
As one of the coordinators of a local radical mental health group, a person who works as a peer at a community mental health center, and a volunteer at a local safe space that serves the houseless, I encounter a lot of people who are struggling in various ways. Sometimes it strikes me as a little strange that some people can go through most of their lives and not ever be in a position of supporting someone who is experiencing life and death struggles. Personally and professionally, I end up spending a lot of time with people who don’t know how they are going to survive and with people who want very much to die.
Interestingly, it seems that many people who experience crisis may not experience such difficult times if they receive support within their community when they begin to struggle with some aspect of their life or experience. While there are many current dialogues about “early intervention,” very few of them send the message that there are ways that family and friends can support people who are struggling, or that people can learn to support themselves through difficult times.
Research shows that psychosocial support and caring relationships are vital to people’s wellness, but most media messages encourage people to simply call the doctor sooner. We do not see public service announcements designed to raise awareness of the fact that, for many of us, our families and communities are so stressed that they are not able to perform the primary function of human relationships, which is to support and care for one another. We are not informed of the view that, in regard to human distress, perhaps the strain on family and community networks has something to do with why so many people seem to be having a hard time within their lives.
Psychiatry has, by and large, actively marketed the view that human struggle is a matter of mental disorder and mental disorder is not something that we can handle within our private lives. We are encouraged to approach supporting ourselves and other people as something that is beyond what we are capable of, something for “professionals” to handle.
Psychiatry and the mental health industry has also expanded their definitive jurisdiction in determining the appropriately normal ranges of human distress or anomaly within experience and has established that even aspects of the human condition such as mild depression, anxiety, and grief are troubles that are best handled by professional agencies.
We are led to believe that we, as family and community members, are not equipped to know what to do when we ourselves or our loved ones begin to show “symptoms” of being in a state which could be considered to be a mental disorder. Despite our knowing that other things may be occurring in our lives that could be causing upset or confusion, e.g. trauma, loss, life transitions, physical illness, social alienation, and occupational predicaments, we believe that if we begin to show signs of “not being able to deal with things” that we must seek professional help, either for ourselves or for our loved ones.
Last week, I was watching a brief video clip of therapist and activist Will Hall talking about suicide and as he spoke about listening and about empowering people, I found myself thinking, “Yeah, but how…? A lot of people do not know how to do this!”
Neighbors have traditionally helped neighbors, friends have helped friends. There is nothing new about people reaching out and trying to finding a hand to hold in some way.
Why then does it seem so hard for some people to find the help they need?
In spite of the fact that I am a person who has spent enormous amounts of time with people in all sorts of crisis, who has struggled extensively within my own life and who has taken classes, had trainings and spent many hours considering what it means to be truly supportive to another human being, I sometimes don’t know what to do or how to be with a person who is having an extremely difficult time. It frightens me to think about how ill-equipped most “normal” and busy Americans may be to respond appropriately to people who are having a very tough time in their human experience.
It is no wonder that psychiatry and the mental health system are such a booming business. We have, as a culture, become impaired in our capacity to support one another or ourselves in human struggle. We do not have time for distress, for confusion, anger, and grief. There is nothing we can do. We must get to work and pay the bills. We do not have time to listen.
So, the formal mental health system has declared that human struggle is their business, not ours.
However, we know that many people are not well served within formal systems of care and so we are left to grapple with the daunting question of what to do when it seems like the help that is available may not be all that helpful.
Given who I am and what my life entails, I have had to think a lot about how to navigate supportive relationships and how to not let people’s needs for support consume my life entirely, while still being supportive in ways that I can.
Sometimes it works out better than others.
In late June, a member of our local support community died. The cause of death is suspected to be suicide.
I was one of the last people the person spoke with.
Since then, I have wondered what I might have done wrong, or what I may have done differently and whether or not I am even a good supporter. I have also thought a lot about why this person died, and what might have prevented their death, or possibly prevented them from wanting to die in the first place.
I suppose I could have cancelled my plans for out-of-state travel and gone to sit with the person while they talked about how much they wanted to die and how angry they were at so many things. I could have tried to get in touch with the person’s other known allies and developed a plan for more extensive support, but the person had told me that they didn’t really feel comfortable with people worrying about them or talking about them.
I didn’t have a lot of time during those weeks. My children had just gotten out of school for the summer and I had taken on an extra shift at work. I usually have a fairly hard time during the seasonal shift and so was trying to do as much self-care as possible in the small amounts of free time I had.
I didn’t know the person that well and I did the best I could, given the circumstances.
I met with them at community mutual aid group and I stayed late listening to what they needed to say.
“The system is useless. They just locked me up and then bailed when it was time for me to go home, gave me a card with an appointment and the person was a jerk. They didn’t even listen. None of my friends will talk to me. They don’t know what the hell to do. They’re freaked out. I’m freaked out! What the hell happened to my life?! I can’t get out of bed, I can’t stop crying…I mean, look at me! I’m a mess! What the hell am I supposed to do? The pills don’t work. They’re making me feel worse! I can’t talk to my therapist because they’ll throw me in the hospital. I’mnot going back to the hospital!”
“I know,” I said, “it sucks. I’m so sorry that this is happening in your life.”
What else could I say?
I worked with the person a little in imagining getting through the day, moment by moment, and on identifying very small aspects of their life that might not be completely terrible. We spoke some about crisis as an opportunity, about plans and empowerment.
We discussed the possibility that perhaps they should talk with the provider who was making so many medication changes, that maybe that had something to do with them feeling so out of control.
The last time we spoke, we discussed the tendency for people who want to die to sometimes not reach out to supporters when they are struggling the most and the person agreed to get in touch if they felt like checking in. However, they did not contact me the day they died.
I texted the person for several days, because I didn’t know that they had gone through with the plan. When the texts went unreturned, I began to think that perhaps the person had died. If I had known how to contact the person’s family, I might have made a phone call. If I had known the person’s address, I might have gone to knock on their door. I didn’t know these things though, and it wasn’t until days later, when a community member saw the listing in the obituaries and notified us, that I knew that he had passed away.
In the radical mental health community, being a strong supporter to friends in need is a core part of the culture and values that define the world we want to be a part of, the world we are trying – in our ways – to create, even if only within our small lives. However, the reality is that our best intentions exist within the larger world and the struggles that we face as individuals, families, and communities are sometimes bigger than we can easily manage and we just don’t know what to do.
The statement “you have to meet people where they are at.” is one that is tossed around rampantly in mental health and support circles. Yet, many of us don’t have a very thorough understanding of what it means to be empathically present and accepting of a person. Supporting people with loving kindness requires good communication skills, the ability to suspend judgment and listen compassionately, as well as a certain degree of grounded emotional awareness.
For people who themselves are struggling, another person’s difficulties may be hard to support, particularly if the way that those difficulties are expressed is triggering or re-traumatizing. This is not to say that there is anything wrong with any particular way of experiencing struggle, but that people sometimes have conflicting support needs. If a person is in a state that is perceived as frightening or threatening to supporters, it can be hard to have the open heart that effective support often requires.
Pragmatically speaking, it is not always reasonably possible for us to stay up late consoling our friends and acquaintances, to simply spend the time that may be needed to help a person find their way. Sometimes, we just can’t be there when people most need us to be there for them.
This can leave people feeling unsupported and cause supporters to feel conflicted and even resentful of the circumstances.
It is crucial that we be clear about the limitations of support that we may be able to offer at any given time. When I am not able to support a person in the ways that they feel they need to be supported, I am clear that the reasons for my limitations are rooted not in a lack of caring for them, but in my need to take care of myself and be present within my own small life. There have been many times that I was unable to concentrate on what my children were trying to speak to me about because my mind and heart were occupied by someone else’s struggles. The time I spend supporting other people is time that I cannot spend caring for myself, because my most crucial self-care practices involve me being quiet and alone.
Setting boundaries of support is hard for me, because I believe so strongly in the value of supportive communities and I genuinely do want people to be okay. Although I know that there is no good reason to feel conflicted when I assert my limits of support, and I know that such limits are healthy if I want to be able to stay well and offer sustainable support, I feel badly when I have to say that I am not able to support someone in the ways that they feel they would be best supported.
People often identify support needs as being “just somewhere to go, where people will listen.” I know that such a simple thing would make a huge difference in their experience and yet community members often do not have the time or emotional availability to sufficiently meet that need, due to people struggling to keep their own lives on track. Within the formal system of services in this community there are not such spaces available.
Many times, people in crisis have expressed to me that they don’t feel safe talking with their therapists about things like suicidal feelings, because most professionals in formal systems are required to involuntarily commit people who present as being a potential harm to themselves. People don’t want to go to a hospital voluntarily because they don’t feel that it would be helpful for them or they have had experiences in hospitals that legitimately have been harmful to them – such as restraint, forced drugging, or abusive treatment by staff.
Therefore, the community is left to support their needs and if their needs are such that the community struggles to support them (e.g. housing needs, extreme states that require extensive listening and support time or which may create difficult communication dynamics, struggles that are compounded by active addiction) then people do, it’s true, fall through the proverbial cracks in ways that are tragic and which could likely have been avoided had there been appropriate services and supports available, such as peer respite houses and other community safe spaces.
In a perfect world, people would receive all of the support that they may need from kind friends and loving family members. People would understand what they need when they are struggling and would be empowered to meet those needs. Communities would be equipped with the skills and perspectives that support healing and nobody would ever have to turn to formal services in an effort to meet their needs. However, this obviously isn’t a perfect world and it seems that often the people who most need loving support have very limited access to it.
It is sad to see that many people do not find what they need, knowing that often what people most need is love and acceptance, patience and understanding, someone to believe in them. It would seem that these would be such simple things to find. However, in a culture and economy that has precious little time for the messier aspects of our human condition, our faltering hopes and broken dreams, our old wounds and persistent memories, it can be hard for pain to find ease.
In our local mutual aid group, we are trying to support one another in becoming better supporters, learning how to communicate support needs to one another and to share in the community responsibility of supporting people who are going through tough times.
We are also talking a lot about how important it is for us to learn how to support ourselves and to find sources of support that are helpful and accessible, like online discussion forums, peer-run warmlines, or wellness practices like journaling, spirituality, spending time with animal friends or whatever works for us.
We are talking about why we struggle. We are talking about what we need to see in our world to sleep well at night and we speak honestly about what breaks our hearts and makes us angry. Most importantly, we are talking about what might help and how vital it is that we stay alive and do the best we can to keep working toward the world we want to live in, a world that is ultimately built on small choices in how we spend our time, whether we choose love or fear, hope or despair, our own comforts or – as we’re able – the comfort of those who’ve known too little kindness.
When I was a young person, I came across the thought that if a person sees a way to help and turns from that opportunity then something dies a little in the human heart. As I have gotten older I have had to learn that I can’t save everyone, or anyone really. Sometimes I know that the only thing I can do is sincerely hope that a person finds what they need, in themselves and in the world. Mostly, it seems that people facing crisis in their lives may best be served by friendship, a hand to hold, someone to walk with them through the dark.
May we all find the friends that we need.
Faith Rhyne is a parent, educator, and a radical mental health activist. She became interested in psychology and psychiatry at age 13, when she was put into forced treatment for the first time. Faith has abandoned her old diagnosis of bipolar 1, severe with psychotic features, in favor of a holistic understanding of madness. She deeply values the human right to define one’s own experiences in ways that encourage wisdom, gratitude, strength, and possibility. She writes about neurodiversity, narrative, and healing the relationship between self and world.