The Talk: Why you’ll need to hold your own hand when I’m sick

I think fundamentally, we’ve got the idea of “coming out” wrong. It’s not ripping off a band aid, it’s not moving from one room to another. It’s something we do repeatedly, it’s a time stamp that we lap again and again. In a queer context, this is fairly well known now.

I’ve come out lots of times. I came out to my Dad in Fidel’s cafe in Wellington at 18, and every time I get sat at that table my heart rate treats it like the gym. I came out to my Mum crying on a trampoline and honestly, haven’t been a fan of trampolines since. 

Coming out about disability is different. 

But if coming out as gay has taught me anything, it's that you can have people talk about you, or you can talk to them about yourself first. You can show people what you need them to see, or eventually, they’ll realise that the whole time that they’ve believed that they were seeing you and knowing you, their blind spot was filling in the details. Sometimes they’ll blame you for this. But the truth is that everyone has a blind spot, our brains just fill them in differently. 

Since I was diagnosed with bipolar II (some say we are doing away with types one and two, but personally I still identify with how type two is described) I’ve worried about how my disability affects, and will affect, my relationships. As an only child (from a modern family), friendships are huge to me. I’ll usually have about four or five close friends who I mostly hang out with one on one. I’m pretty choosy about who those four or five people are, and I’m the kind of person that it takes a long time to get to know. My disability (which I think of as a disability because society isn’t designed to support my kind of brain, society is disabled to deal with me, not the other way round) is cyclical, which brings its own set of problems to relationships. 

I’ve been through that cycle enough times now to understand that it’s easy to accept someone’s disability when they’re asymptomatic.

If you’ve only ever seen spring, it’s hard to picture winter. It’s even harder to know what to do when it arrives. 

I used to describe my close relationships as being cyclical too. Most of these friendships would only last for one cycle; about two years. I thought for a long time that there was something wrong with me. Maybe with how I communicated, or how I handled my disability when it was active. I would try so hard to be the best friend I could when I was well so that the times when I wasn’t were balanced out in the wider scheme of my relationships. Whenever I’m really depressed and my mother is trying to say something helpful, she will often say “You are a good friend to your friends and they are lucky to have you”. Mostly, this pisses me off. Because when you’re insane, everything everyone says pisses you off. It’s frustrating to me and whoever I’m interacting with. But it’s part of the cycle. And if people don’t have a map of that cycle? They’ve just come upon a landmark they weren’t expecting. 

Sometimes it’s like coming across an amazing garden that we get to explore together. I get to show you amazing things and we get to play together. You get to be with me in having a kind of freedom that just doesn’t exist anywhere else in society, you get to play the tourist into the positive parts of having a cyclical mind. But at other parts of the cycle, it’s more like coming across an abandoned house. You’re super worried that there’s exposed asbestos in there, but I’ve locked myself in the wardrobe and I don’t have the brain power to remember what asbestos is, let alone be concerned for you. Let alone be concerned for me. 

But, if I can give you a map, then maybe you can bring a mask with you. If I give you a map, you know that this is just a temporary location for me. I’ll come back here lots of times, and when I am here it will feel like this is where I’m going to live forever. But hopefully, because I gave you a map, you’ll know that’s not true. 

After about six to eight months of being close with somebody, somewhere in our conversations and spending time together, I’ll decide to have “the conversation”. When I was in school, I was outed as gay. Was I being particularly good at being secretive? No I was not. Was it traumatic? Moderately. But this experience led me to realising the power that is in disclosure and language. There are certain things about myself that I choose to disclose so that I can take back the power of having my own terminology, language, and philosophies about who I am, what I am, and how I make sense within the context of the whole. I spend a lot of time living in my own head, and the “conversation” is me showing you the thinking I’ve done. It’s not me giving you the answers, but it’s me showing you the questions, ahead of time; in case there’s ever a pop-quiz that surprises us both.

The conversation covers several areas but it always begins the same; if we stay friends in the same way we are now, there will come a time when you will see me unwell. We will talk about ableism and invisible illnesses. We will talk about baselines, and about how most of the time, I sit in a space where I am slightly depressed, but high functioning. We will talk about psychosis. We will talk about the anti-psychiatry movement and how stigma affects our lives, especially those of indigenous people, and women. I will tell you what it feels like to watch yourself doing things without having given yourself permission to do them. I will tell you that hurting you is one of my biggest concerns, and is part of why we are having this conversation. 

I will tell you that I love you, and that I really value our friendship.

But most importantly, I will give you an opportunity to leave, and I will give you the opportunity to tailor the relationship so that it’s what you can handle at this time in your journey. The world is full of so many things, and we can’t expect everybody to understand everything within it. Not everybody can handle being close with someone with a severe mental illness, especially when it's in an active phase. Especially when the invisible becomes visible. I want you to understand that not being able to deal with this, is not a personal failing on you or me or our friendship. It is a symptom that we both have as being part of a world itself which is sick. 

But on top of that, it's me telling you that it’s OK not to get this right 100% of the time. It’s OK to ask questions. It’s OK to make mistakes. But it’s also me saying to you, that if you’re going to be friends with someone with a disability, you are going to have to work on the ableism that the capitalist world has placed within you. You’re going to have to meet me halfway, and there are going to be times where you have to go a little bit further than that, because I can’t travel to you. I’m locked in the house, I’m breathing in the dust and the asbestos with no mask and I can’t see that this isn’t all there is. I’m not saying I need you to save me. But I do need you to understand that there are times that I’m not fully there with you. There are times where you are going to need to go elsewhere to understand what just happened between us, to understand what I’m saying or to understand that some things in my head will never make sense outside of it. What I’m saying is that I need you to hold your own hand when I’m sick. When I’m sick, I can’t stop my world just to save you from your own inherent ableism. If I have to do that, our friendship is already dead.

It’s funny to me, but I have never had this conversation go badly. Being a ‘good person’ is desirable. We want to be good. But sadly, we want other people to think we’re good even more than we want to be so. I would prefer people to say that they don’t get it ‘yet’, but that they’re trying. I would prefer people telling me that they don’t want me to contact them when I’m not well, over saying that they’re there for me no matter what. Nearly every episode I’ve had in part leads to the breakdown of a friendship with someone who I have already had this conversation with.

I acknowledge my faults in these break ups too, but when I reflect on them long afterwards, ableism combined with the social conditioning of wanting to be perceived as a good person, are the main contributors. It’s not fully the fault of either me, or the friend. But not trying to be better, and not admitting where we’re at with our thinking, understandings, and practical experiences, are faults we can both have. You don’t have to be perfect, you just have to try. You really do have to put on your own mask first. You have to be able to understand that the part of me that you’re upset with, is the part that wasn’t there to hurt you.

Ironically, one of my signs of being unwell is over-apologising. That’s how much I don’t want to hurt you; I’m apologising to you for it before, during, and after it happens. I think for my own health, it’s important to bring this conversation back to the concrete. It always sounds like I’ve done unforgivable things, because that’s part of the sickness. But if I was to apologise quickly and brashly it would look something like this:

I’m sorry for screaming at you.
I’m sorry for kicking you in the shin.
I’m sorry for ringing you over and over and screaming at you.
I’m sorry for telling you I didn’t want to see you ever again.
I’m sorry for telling you a future I thought was yours.
I’m sorry for making you worry.
I’m sorry for talking about myself and nothing else for a whole conversation.
I’m sorry for suddenly falling off the earth.
I’m sorry for wanting to die and not telling you.
I’m sorry for wanting to die and telling you.
I’m sorry for wanting to live forever and die at the same time 
all while you were still here suffering without me.

Listing this felt incredibly vulnerable. But seeing it outside of my head shows me that actually, I can still be worthy of friendship. None of these things without apology and repair on one side, and empathy and understanding on the other, can’t be rectified and then used to strengthen the relationship further. If we both understand the seasons changing outside the window, we can both understand that the seasons will continue to change whether we close the curtains or not. We need to both understand that you are always allowed to leave the room. Because if as a society we were doing this well, it would never be just you and me in there. But sadly, sometimes it might be. We’re all drinking from the same water, just some of us are getting sicker than others. 

I am not perfect. When I am in a darker part of my seasonal existence, I am even more likely to make mistakes. I’m bipolar, but I’m also human as you are too. At its briefest understanding to me, my illness gives me the widest range of human feeling available. If I’m sick, I need you to be able to triage like I do when you come to me in pain. I can’t help that you were shocked at me screaming beside you in a small room. I can’t help that you saw me lose touch and ask if I was real and hit my head on the wall again and again and again. I’m reliving a memory on loop and I was trying to break out because I could feel the physical sensations of it in my body. I need you to know I didn’t see you. But not that I don’t see you. You are part of why I’m screaming back in the face of this, instead of lying down and not getting back up.

To be honest, after navigating this waka for some time now, most of my closest friends are like me. Translating yourself gets tiring, especially when you are still learning the language along the way. It’s easier just to speak to people I can communicate with without having to provide subtext and aftercare, when I’m the person that needs to reach out because my internal world is leaking into my outer world. 

But if I think about the world I want for mokopuna, if I think about how this disability, this way of being is both nature and nurture and everything else in the equation, then I want us to interact with as many different ways of being as we can. For us, and for others. For everyone. I don’t just want to show you how a community can care for me, but how a community can care for you too. If we’re honest about how fast you can handle the knowing, and the seeing, and the holding of this, we can both become better even in the moments where I’m objectively, worse.

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