Knots and Networks: Getting Support From Our Communities

Section: 

How can we work with the people in our lives to get healthier as individuals and build supportive communities? One place to start is learning about ourselves. Our culture puts out a lot of messages that make it seem like having trouble staying balanced means you're weak or dysfunctional, so talking about your problems can mean that asking for help leads people to think you aren't strong enough to handle yourself. This is bullshit. Everyone has problems, and pretending they don't exist just means we never develop the self-awareness to handle them.

One of the first steps in getting support from the people around you is taking a good hard look at what you experience, what might cause it, what helps, what other people around you notice, and how they can help. If you don't learn about your patterns, it will be really hard for you to communicate about them.

Taking Stock

It's really hard to take an honest look at the demons in our heads. Sometimes it seems pretty clear that the demons come from outside: oppressive circumstances, traumatic experiences, loss, grief, drugs, family, etc. Sometimes it's harder to pin the causes of our instability on people or events outside ourselves: often the depression seems to be a cause of misery rather than a state of mind caused by misery. Sometimes we see that our tendency to fall madly and flagrantly in and out of love over and over again might have a lot to do with the accelerated expansive mind that gets called mania, and we might doubt if anything we feel is true. Sometimes we might find ourselves seeing message or hearing voices that no one else perceives, and we have absolutely no idea where they come from. Sometimes we might find ourselves feeling paralyzed in the middle of a panic attack with no idea of the way out. Sometimes any distinction between outside or inside becomes blurry and impossible, and we can't find simple answers anywhere. Some of us are sure our behavior is caused by a disease and others are sure it comes down to spirits. Most of us are trained to think it comes down to being deficient and messed up.

Even if you don't know what causes you to behave the way you do, a good place to start is writing down a list of patterns or "symptoms" in your own language. When you are really going through it, this becomes something that can help you, your friends, your family, and your healers/doctors/providers recognize what's happening and reflect it back to you. Think hard about what feels wrong and how your thoughts, perceptions, and behavior change from whatever you consider your baseline. Be really honest with yourself and don't try to hide things to make it easier to swallow. Here are a few questions to ask yourself:

  1. When things might be going wrong or slipping out of control, are there changes in what you say, how you relate to others, whether you eat regularly, how you see yourself, whether you keep obligations at work/school/with friends, your general demeanor (eye contact, posture), the nature of your dreams, how much you sleep, alcohol and drug use, how you spend money, whether you exercise, how fast you talk, how many ideas you have, whether you're satisfied with your life, how much things stress you out or make you despair, whether you take necessary meds/supplements, how sexual you feel, whether you can get along with people, whether you see or hear things other people don't, whether your perceptions become intensified or dulled, whether you get really religious and grandiose or full of conspiracy theories, etc?
  2. What do these signs look like when they are at an early stage where some preventive action might help you? (For example, many of us who are bipolar have certain signs that we are in the early stages of being manic "” like waking up early every day, suddenly needing to write constantly, dressing swanky all the time, making a ton of friends "” that seem pretty harmless by themselves but indicate to people who know us that we're in the beginnings of something that can get really dangerous if we don't keep an eye on it.)
  3. If this is something you've been through repeatedly, what are signs that you are really heading towards crisis? Do you start sleeping all day every day? Do you get suicidal? Do you start hallucinating? Do you stop eating? Do you break off all your relationships and just hang out with strangers? Do you drop out of school/work/groups? Do you lie? Do you hurt yourself? What do the really scary times look like for you?
  4. If you have a diagnosis and you find that it's a helpful way of seeing things, how do your behaviors correspond to words like "mania" or "psychotic" or "dissociation" that might help a doctor or family member figure out what's going on with you? If you have a diagnosis, it's a really good idea to do a bunch of research on it "” even if you end up totally disagreeing and throwing the diagnosis out. Knowing what people have to say and what research has been done can help you form your own opinions about what you're going through. If some of these medical ideas fit you they can be really useful to help you get a better handle on your patterns. If you poke around and it all seems like bullshit, it might help you start forming other ways of understanding yourself that fit better.

Sharing your understanding with other people

It can be really hard to talk about these things. One reason is that the language we've been given is so disempowering. In "Bipolar World," the essay that prompted the creation of The Icarus Project, Sascha wrote about feeling:

"So alienated sometimes, even by the language I find coming out of my mouth or that I type out on the computer screen. Words like "˜disorder,' "˜disease,' and "˜dysfunction' just seem so very hollow and crude. I feel like I'm speaking a foreign and clinical language that is useful for navigating my way though the current system but doesn't translate into my own internal vocabulary, where things are so much more fluid and complex."

If you can spell things out in the words that make sense to you, you can start educating the people around you about what you go through and how they can help. At first it can be really hard to have these conversations: we aren't trained to be proactive about our health and honest in vulnerable ways, and people aren't used to having these conversations. Even though it might feel really awkward and strange at first, so often you'll find yourself really surprised by how open people can become when they see that you're making a truly genuine effort to reach out. Once you get used to talking openly about these things, it can become a really empowering act that inspires other people to start opening up about the vulnerability inside them. You will never know what can happen until you try.

We need to find ways to understand ourselves in language that resonates with our actual experiences of the world.

Ways Other People Can Help

One idea, adapted from the book Loving Someone Bipolar, is to create a holistic treatment plan. The first step is what I described above: doing a really thorough job writing down your patterns, as you understand them. The next step is to write down a list of what you need and what works when you're having a hard time (if you know). You can check this list when things get hard, and you should share it with key people in your life so they'll have a better idea how to help you. If you don't write down a real physical list, at least talk about these ideas. (But I think it's a damn good idea to make an actual physical list that can be referred to cause I know I sure as hell don't think straight when I'm getting kinda crazy.) A few things to consider:

What are the basic self-care things you need to be doing for yourself? (Food, sleep, exercise, getting out of the house, meds, vitamins, alterna-treatments, meditation, paying your bills, keeping appointments"¦) Have your friends ask you if you are actually doing these things. If not, can they help you out by either reminding you or doing some of them with you? (Cooking food, dragging you out of the house, making you exercise, meditating with you, etc.)

When you feel out of control, what helps?

i. If you're depressed? ii. If you're manic? iii. If you're angry as hell? iv. If you're totally despairing? v. If you're really agitated? vi. If you can't stop drinking/smoking/eating sugar, other addictive behaviors? vii. If you're seeing things other people aren't, or hearing things, or feeling persecuted and paranoid? viii. If you're hurting yourself? ix. If you're talking about suicide? x. If you're dissociating from reality? xi. If issues with your family are driving you nuts? xii. If issues of trauma are upsetting you? xiii. If you hate your diagnosis/meds/fact that you can't get through school/fact that you keep messing up relationships.

Can you identify any of your triggers? If you can identify triggers, you can try to avoid them, and other people can help you see when some trigger in your life might have set you off. Possible triggers: difficult relationships, intense arguments, work-related stress, caffeine/alcohol/sugar, poor diet in general or eating foods you're allergic to, nasty epicenters of mass culture like shopping malls and freeways, lack of exercise, darkness/light/cloudiness/sun, seasons, family, lack of sleep or bad sleep schedule, lack of schedule and structure in general, over-committing, being way too busy, television, illness or death, the world being messed up, abuse/trauma/sexual assault, classism/racism/poverty, moving, loss of job, pregnancy, death.

If you've decided that your patterns feel out of control, can the people in your life help you to seek out services that might help you? Whether you're turning to a nutritionist, a doctor, a cranio-sacral worker, a peer counselor, a therapist, a bodyworker, an energy healer, or an acupuncturist, it can be really helpful to have someone else help you go through the process of doing research and making phone calls. If you have decided to seek treatment, let the people in your life know so you can share your experiences and check in with them. It is a big step to build a relationship with a new healer "” there's no reason to keep this all to yourself.

What to do in times of crisis "” check out our piece called Navigating Crisis

About the Decision to Take, Reject, or Stop Medication

Deciding whether or not to take psych meds is an incredibly complicated decision. It can seem very simple to write them off when you are deconstructing the pharmaceutical industry and enjoying a stable relationship, but it gets a lot more complicated when you're the one who's hearing voices telling you to kill yourself, or you've lost another job because you've been too depressed to leave the house for months, or you've tried a decade of bodyworkers, supplements, and re-birthing but you still can't keep it together.

If you're the supporter of someone who's deciding whether to go on meds, try to be patient and non-judgmental. It's a really different thing when meds are being forced on someone versus when the person is actively choosing them because they feel like their problems are so out of control they don't know how else to deal. As far as what makes a good supporter in this process: remember that you want to be a supporter. Saying things that are judgmental and shortsighted can make your friend feel totally misunderstood. Buying into the lines from the nurses at the psych ward who will tell you "don't ever let your friend go off her meds or she'll never be the same" and becoming the medication police is also a bad way to go. If you feel strongly that you've got to educate your friend about side-effects and potential problems, do so in a tactful way "” if they are open to hearing it. But how do you walk the line when you feel like someone really is in danger/completely screwing up their life and you think they probably should take the meds, but they are totally opposed and think you're evil for complying with the doctors? I think the best you can do is to present your case with as much compassion and honesty as possible, and try to avoid any comments that make your friend feel judged or insane. Know that your friend just may not be able to hear you right now. Also know that you might not be right.

Building Better Relationships

In many ways this can be a tricky catch-22 for those of us who struggle really hard with our mental health: often, if we don't start the process of learning about our behavior, taking responsibility for ourselves, getting treatment, dealing with trauma, developing a spiritual practice, doing creative work, forgiving and relaxing, or whatever else it is we need to find a little peace, it can be hard for us to have healthy relationships no matter how wonderful the people in our lives are. At the same time, however, it can be really hard to get better if we don't have supportive friends and family to help us see ourselves and do the things that keep us healthy.

Assuming you've decided you're going to take responsibility for your mental health and try as best you can to learn to work with it, one good step in making the relationships in your life healthier is to think really hard about how your patterns affect the way you treat the people who are already in your life "” and share this information with them. For example, when you get depressed, do you get cranky and irritable with everyone in such a way that they shouldn't take anything personally? When the world is making you really overwhelmed, is it better for you to spend time alone or is it actually better for you to be around people who will touch you and talk to you, even though you might insist on being a miserable hermit? When old memories start haunting you is it better to be still or to get on your bike? If you start dissociating when you're being sexual, does this mean there's something wrong with the other person or does it happen because of trauma in your past? If you start acting super angry, does the other person need to change or is it related to some mood state you need to work with in yourself? Don't set yourself up for endless disappointment by expecting that everyone else should be able to read your mind, or by deluding yourself into thinking that the mess inside your head isn't part of what makes relationships difficult. If you don't tell people what you need, you can't expect them to know.

Criticism and Feedback

Can you hear criticism and feedback about your own behavior? It's really important to develop the ability to hear hard things people have to say that might help you grow. A lot of us who struggle with these issues don't always have the clearest perception or the best judgment when we're in difficult states. If you can get your ego out of the way and accept that sometimes you need other people to help you see yourself clearly, it can be immensely helpful to have friends or family mirror your behavior back to you. If you've educated people about your signs and patterns, they can find respectful ways to talk to you that don't sound like judgments: for example, instead of saying "why the hell can't you keep the kitchen clean" they might say "you know, I'm noticing that you're having a really hard time keeping things clean and paying your bills. You usually get like this when you're getting down. Is anything going on with you?" Also, for those of us who take meds, it can be really helpful to have someone ask if we're remembering to take them. I used to find this really humiliating and horrible, but now I'm really grateful for the folks who are close enough to me that they can notice I'm staring into space with glassy eyes and having trouble talking and ask if I remembered to take my meds. It's amazing how much more people can help you when you are willing to hear them.

Actually Leaving the House

The whole feedback loop between feeling really sorry for yourself because you don't have friends but never leaving the house to do anything or meet anyone can be pretty incredible. Some rational part of us knows we won't get closer to anyone if we stay in bed all day, but how the hell can we leave the house if we feel like this? A really important part of deciding you're going to try to get a handle on things is to be willing to work uphill a little and fight the old, self-defeating patterns. You're just not going to build community for yourself if you don't leave the house. It just won't happen. It can be a really good thing to get involved with activities where other people will be around, even if they're not your soulmates, even if it seems hopeless. Go to classes at a free school or a bike repair shop or a community college, drag yourself to readings or shows, join groups like Food Not Bombs, go to church if that's your deal, or a Zen center, or a drag show, join a bicycle circus, just sit in a coffee shop and read, take walks all over you neighborhood, just get out of the house! Sometimes you have to consider it like training wheels: you might not meet people right away, it might take weeks or months or years, but if you don't show up it will never happen. You're planting little karmic seeds, and if you keep at it and keep open, you will find people out there somewhere.

Being Alone

All that said, spending time alone can be an incredibly important thing. There is a certain kind of healing that can happen when you spend a lot of time in solitude that is really hard but ultimately so important. When I was 15 my few friends joined together and kicked me out of their lives because I was all manic and overwhelming and too much to handle. I crashed hard and spent months totally alone in an agitated black depression, writing furiously, listening to music, and falling in love with the world despite all my pain and rage. Those months were largely absolutely miserable, and I don't know if I have ever felt so alone and unwanted in my whole life "” but so much of what I learned in pulling through that period became a raw tenacious strength that has gotten me through such hard times. They say scar tissue is stronger than all our fresh young skin. I have to believe it.

It is so damn hard to be patient. When we hurt so bad it can seem so impossible to wait for the appearance of people who can witness us and touch us. It is so easy to feel neglected and alone, unwanted and victimized, full of despair and rage and dark, dark pits of pain that we don't want to touch. It is so easy to blame it all on the rest of the world and all the heartless people out there. It is so easy to start getting drunk or lazy or crazy or laid. It is so hard to let things take time. But for a lot of us, we are wounded in ways that make it hard to get close to people right away, and it does take time. Some of us end up moving to places with more like-minded souls. Some of us crash and burn for years and finally get enough balance that we make our way in the world. Community doesn't appear instantaneously when we decide we're ready for it. It happens when it's ready to happen. In the interim, a lot of us have to learn to be with ourselves in the quiet empty hours when there is no one to touch. We can see this space as possibility: room to create, to grow, to focus, to learn, to read, to explore. We can see it as space to suffer. We can hate ourselves and forgive ourselves a thousand times. We can make schedules and try to stick to them. We can get trapped in our rooms. Solitude can be so many things. We have to learn to live with it.