Good communication is essential to me living successfully with schizoaffective disorder. Ask any mental health worker what the keys are for someone with a mental illness to have a good outcome and they’re certain to say “a good support system.” But, while that’s good advice, it’s largely up to the person with the mental illness and their family and friends to determine how to embody that good support system and it can feel like you’re out there on your own trying to create this good support system. Every support system will look different – different people have different needs. But it’s been my experience that a good support system cannot function without good communication.

When I say good communication I certainly mean the plethora of communication tools available to us now; e-mail, text messaging, my smartphone’s ability to track my location, a backup landline, even good old fashioned handwritten letters, among other tools are all utilized with great success by my support system and me. You can’t have good communication without the ability to communicate easily. But what I’m talking about is the even more essential element to good communication: trust and rapport. If I don’t trust my support system, I won’t call on them for help when I need it. If I don’t have a good relationship with my support system, it makes the whole business of taking care of me all the more difficult.

My dad and I have always had a great relationship. He’s my best friend. We’ve been cultivating our relationship with each other for my entire life. My earliest memories are of me holding the flashlight for him while he worked on the inside of a computer, pointing out the various components and telling me what they did. He taught me everything I know about fixing computers. We’ve built a relationship in which we know we love each other unconditionally and I know I can come to him with any problem I might have and he’ll help me work through it. We frequently have frank, open, and revealing conversations about my mental illness. Many of the posts for this blog are a direct result of these conversations. Those discussions do more than just help me write another blog post, they reveal to me the underlying structure of how my brain works, they clue me into the depth and intricacies of my illness. Those discussions enable me to better treat myself because I end up with a better understanding of how my brain works. Without that trust, without that rapport we have with one another, those discussions would never happen.

But it goes beyond just having the trust and rapport. There were a few years in which I had my mental illness where we didn’t have those discussions. It took a bit of an Ahh, hah! moment for each of us to start the discussions.

Two of them actually.

1. One of the most powerful experiences I’ve had in therapy was with my Cognitive and Behavioral Therapist a number of years ago. I was explaining how a certain situation made me feel a certain way and she actually asked me why it made me feel that way. I’d never been asked why before and it surprised me that I knew the answer. It revealed to me that the answers to living at peace with schizoaffective disorder lay within me. It’s hard for me to get to that place of knowing why without help, and so I started to open up more with my dad; revealing more and more to him about how my brain works.
2. I wasn’t able to bathe for a period of several years immediately after ECT. I also wasn’t able to wear clean clothes. I wore the same dingy, dirty clothes day after day – my mom complained about my smell and I was just thankful that crust punk was popular during that time because I could just pass for one of them. Around the time I met with my CBT, my dad decided he would ask me why I wasn’t showering or wearing clean clothes. My answer was simply that taking a shower made me feel like my skin was melting off, that it was incredibly painful for me. I told him that I wore the same clothes day after day because clean clothes had a tendency to make me psychotic. And in a similar way, it was powerful for my dad to realize that he could just ask me about my behavior and get an answer that made sense in the context of me having a mental illness. See my post about Crazy People Logic for more info.

I think one of the chief misconceptions people have against the mentally ill is that they think they have to guess or deduce what our mental state is.

That’s folly.

My mental state is often so complicated it can’t be expressed by my facial expressions or body language (and oftentimes I don’t even have control over my facial expressions). Oftentimes, what people assume is bothering me when I behave a certain way has absolutely nothing to do with what’s actually bothering me. People don’t think to account for hearing voices, or hallucinating, or having a particularly paranoid and/or delusional (e.g. disturbing) line of thinking. I experience things most people simply can’t relate to and so such things never enter their line of thinking when they see me disturbed.

My parents don’t make assumptions about how I’m feeling. They ask me directly: Are you feeling okay? How are you feeling? And when confronted with direct questions from people I know genuinely care about me, from people I know will try to do everything they can to help me feel better, I give as direct an answer as I can. When I tell them I’m feeling depressed, they ask me if I want to talk about it. Sometimes I do and sometimes I don’t. Either way, the end result is it gets my brain gears churning, it gets me eating away at the problem until I arrive at a resolution or an answer.

I think most people tend to make assumptions about how everyone around them is feeling. We oftentimes lay the burden of communication on the person experiencing the emotional pain rather than take the responsibility to ask them how they’re doing. That’s foolishness with a person with a mental illness. Mental illness closes you up, it makes you turn inward; it makes it incredibly difficult to even ask for help because everything else is so overwhelming. So, instead of assuming your loved one is feeling X because of Y, just ask! And then be ready to listen, to truly listen.

Good communication is especially important with the holidays coming up and all of the expectations and anticipation that goes with them. It’s a hard time of year to have a mental illness – the sun isn’t shining nearly as much, it’s stressful to think of all the gatherings and presents to be bought as well as the end of year stuff. Being around family can be difficult, especially if there are family members who aren’t as supportive of your loved one as they maybe need. Seemingly innocuous things can be triggers. So it’s important to ask your loved one how they’re feeling, what they think they need, and to be ready to provide that in the best way you can. It’s even a good idea to come up with a plan beforehand for how to handle holiday get togethers.

I love my extended family dearly, but it’s best for my mental health if I don’t celebrate Christmas with them. Thirty-plus people crammed into a house is a really bad idea for someone like me: I need my space, I get overwhelmed easily, I don’t do well with a constant buzz of activity. It doesn’t mean I don’t love them, it just means my needs are different than their needs and it’s a comfort to me to know that, though I’m missed, I’m still loved and still supported.

Asking is the first step in creating good communication, in creating a good support system. And those mental health professionals are definitely correct, a good support system is essential to living successfully with a mental illness. A good support system is perhaps the first thing a person with a mental illness needs to get on the path to recovery. Because, when all else fails – when the meds aren’t working and the CBT training is ineffective and life is just falling apart – all we really have is each other to fall back on. And having a strong each other will make recovery all the easier.

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