Giving and Receiving Care in Community
My mental health was improving for months, and then as healing is wont to do, things took a turn. This is not the first time I have needed to lean on my communities for care while sick, whether that illness is mental, physical, temporary or chronic.
Things are still rough for me, but here’s what I know for sure about community and care:
Community can keep us out of the clutches of the Medical Industrial Complex.
In the worst of it, if I were to have described my mental state, which I was in no position to do, I would have described a feeling of being trapped while someone else, someone reckless and visceral and needy, someone afraid and desperate, took over my mind. When I voiced these thoughts to those I loved the most, I was lucky that no one made a move to commit me, which I and many others who live with mental illness fear. Instead of resorting to hospitalization, which brings in all the terrors and difficulties of oppressive systems and the medical industrial complex, my communities and I made other moves. We arranged more frequent check-ins, found financial resources to get me additional professional help, altered spaces in our home, and changed relationship dynamics. Psychiatric wards and the help of the medical establishment may sometimes be useful or necessary, but most of the time, for me at least, the comfort, support and access I need can be delivered by a well-developed community and I can be spared the danger, risk and stigma of voluntary entry to one of these places and the trauma and harm of involuntary hospitalization.
Vulnerability is hard, even in community.
Building networks of care, support and love has been the main focus of most of my life. Yet, due to my particular personal traumas, and the stigmas and dangers the dominant society places on me and my life, I often find it hard to share my struggles with my community. When I am feeling unwell, I feel more vulnerable, and find sharing harder. But I have learned that no one is entitled to my vulnerability, especially when it risks worsening my state to give it to them. Yet I still need to be able to ask my community for help, especially when I am unwell, and thus unwilling to share the intricacies of my struggle. I am working to change this by creating a kind of short hand code, using words that feel authentic and describe my struggle without divulging details that make me scared or uncomfortable. I use words that resonate in the larger society and my communities: things like PTSD flashback, bad mental health day, struggling, or having a hard time. Usually these phrases, coupled with a request can get me the help I need, without causing me undue stress or fear. I hear claims often that I should break the stigma around mental health, that I should freely share my darkest troubles, but I do not agree. No matter how much my communities love me, they are not entitled to what I do not want to share. We cannot protect or care for each other by forcing each other to show our scariest selves.
Support is hard, even in community.
Before you ask someone “what’s wrong?”, before you pressure them with a “really you can tell me”, or a “it is important for you to get it out”, ask yourself: are you prepared to sit with this person’s suffering knowing you cannot fix it? If we really look deeply at ourselves, most of us are not trained nor comfortable sitting with the painful revelations we are asking about. What I have experienced cannot be undone, no matter who says what, or how much someone loves me, or how many someones love me. I cannot be fixed, nor do I want to be. The dream for me is to be able to talk freely about my struggles without judgement, to be able to ask for the support I want without judgement, and to be given help in getting the support I want. Too often, when I voice the scariest parts of my struggle, I am met with anger at those who harmed me, horror at the depths of my struggle, pain, rage, sadness, and a whole host of other emotions that my precarious state is often unable to handle for the person I am sharing with. This type of interaction almost never results in healing or comfort for me. The wonderful part about communities, support networks, carewebs, is that we don’t all have to be ready to sit with our community members in this way. Dropping off groceries, or cooked meals, doesn’t require we know the depths of someone’s struggle, it doesn’t require the arduous work of sitting with someone's pain. We each need to look at our own landscapes, our own worlds, our own abilities in a given moment and decide what support we are best suited to give. It all matters, it all has value, and by not offering more than we are capable, we relieve those we are trying to help of the burden of comforting their supporters.
Community building takes work.
When I am unwell, whether from my chronic illness, chronic pain, or mental illness, I struggle to create or improve my bonds in my communities. This is why I take active steps to nourish my communities when I am well in ways that will still be supportive when I am unwell. I want my communities to be as strong as possible not only when I am unable to sustain them, but also when I may need them to sustain me. When I am feeling well, or mostly well, I try to schedule repeating events that could be accessible to me, and others, even when I am/we are unwell. I offer mutual aid and care in ways that work for me, and I make time for all kinds of connection. I also try to make sure my communities are filled with diversity by caring for diverse types of people. We need us, all of us, to make our communities thrive. I try to make sure I host events that are open to families, to sober people, to people of all ages. I try to host multilingual events, and to make our community spaces as accessible as possible. I try to encourage many types of care, many kinds of thinking and feeling, and a variety of bonds in my communities because it makes us all better and more able to care for each other in times of need. Even when I am at my best, building strong, resilient, caring communities takes work, but it is work that has saved my life more than once.
I am not the first or only person thinking and writing about these things. Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha and Brilliant Imperfection by Eli Clare are great places to start reading on these topics.
