Mental Illness

Caregiving: A Response To xoJane (Fueled By Chocolate And Biscuits)

If I may first make a very personal point: I am, at this moment in time, rather sleep deprived. Little Juniper is teething. This has led to some interesting nights of “sleep is for the weak” combined with the disruption that is the clocks going back. But back to other endeavours.

This evening, I came across an article from xoJane that sparked something in that small part of my brain that isn’t preoccupied with sleep and chocolate. So what follows is a response of sorts. In the state I’m in, it could possibly be better considered a more-organised-than-usual exercise in thinking out loud.

There is a lot going on in the xoJane article. One of the first things that stands out is the writer’s distress at how she is perceived by her ex. The way in which people with mental illnesses are perceived is a massive issue. I’m still reeling from a Halloween costume incident involving major supermarkets (beware potentially distressing images when following the link). Heck, I’ll admit I cried when the costume news first broke. After all, people with mental illnesses are more likely to be victims of crime than perpetrators — a statistic Mr. Juniper and I are unfortunately familiar with. He didn’t just endure an assault, he’s had to endure how mental illness is perceived within the judicial system. Now, where was I? Ah, yes. There are massive issues with how mental illness is perceived within society.

On a very personal level, however? To the person being subjected to a behaviour, the motivation behind the behaviour is not necessarily going to be what matters, it is what they’re experiencing in that moment. Just as it is important not to deny what drives a behaviour, it is important not to deny how a person perceives a behaviour. That perception may not be “correct” or “right,” but the road to distinguishing “perception” from “actual” isn’t going to happen overnight. The writer is right in that the driving factors behind her behaviour aren’t being acknowledged by her ex, who favours a more sensationalist and stereotypical view of mental illness, but neither is the writer acknowledging that the reason for a behaviour does not excuse the behaviour.

Which leads me on a detour to forgiveness. Not that this is something particularly discussed in the xoJane article, but I think it warrants a few moments of attention. There is a lot that Mr. Juniper and I have been through over the years. These include some very distressing and difficult moments. To paraphrase The Fault in Our Stars, we’ve both been wounded by his battles. To forgive all that he has done would be to ignore the scars left.  In varying capacities, Mr. Juniper was responsible for what he did. To a large extent, I understand what was driving those actions, what the mechanisms behind the behaviour were; that does in no way erase what I felt and experienced as I witnessed those behaviours play out.

So where does that play into the xoJane article? I think it is perhaps my feeling that in the aftermath there is rarely an absence of shrapnel. And that even when the shrapnel is flying, a caregiver is not responsible for the behaviour they’re witnessing. The xoJane writer’s ex used words that were harmful. There’s no denying that. What I would say is that sometimes when searching for a boundary, a way to protect themselves from what they’re enduring, people may reach for what is nearest, not for what is best. I’ve done it. Not derogatory words, but a harsh comment, certainly. A calm moment outside the chaos eventually comes. When the nurse leaves the room to find the appropriate drugs and kit. When Mr. Juniper lies back on the hospital bed, shaking and cold. There are never enough blankets in hospitals. That’s the moment when clarity settles. I dust my jeans down, though there’s nothing there. Settle back down in the chair. Mr. Juniper stares at the ceiling, but he is somewhere else. I know he’ll come back to me in the taxi on the way home. That he’ll be mine again by the time we’re home. That we’ll have made our peace by the time we’re underneath the duvet.

It is when the lights are out and we give in to sleep as the clock slides through the single digits of the middle of the night that limitations and needs find a balance. The proceeding hours are a period in which that balance is rocked by Mr. Juniper’s need for me as his partner, and my limitations as his caregiver. Over the years, that period of time has reduced bit by bit to the extent that we’re over and done with it in around five minutes. We’ve done it too often to put the energy into making our lives difficult. Mr. Juniper knows how I feel. I know he knows how I feel. I know what needs to happen. He knows I’ll do what’s necessary. And we are now at a point where we both hope those types of events won’t happen again.

Back to xoJane and one of the writer’s final points:

Mental and physical illnesses and disabilities are not the same. While physical diseases may certainly take a toll on one’s psyche as a side effect, they do not directly alter who you are as a human being. They do not directly change your perception of reality. When you have an infection, you take antibiotics. End of story. You don’t ask yourself if maybe your pink eye is just a part of who you are and taking drugs to fix it is just living a lie.

My point is that it’s not just my peers or society telling me that I am inherently and permanently broken, or worse yet, don’t really have any problems at all. My own head is telling me that too.

I keep wanting to make a point about this and I’m struggling. Mental illnesses have physical ramifications. Physical illnesses have psychological ramifications. Mr. Juniper’s body is permenantly damaged as a result of his mental illness. His mental illness has been significantly affected by his physical illness. There is no “end of story” with his physical illness. There’s no fix for the physical and emotional agony his physical illness has brought about. There is constant questioning, however. Did he bring about his illness? Is he simply doomed to suffer with drugs that help but don’t stop his suffering? And yet, his physical illness was what made it easier for me to say he was a person with disabilities. When his disabilty was limited to his mental illness, I found it hard to say he was disabled. His mental illness meant that he was legitimately a person with a disability, but I found it hard to say. In the hierarchy of disability, physiological beats psychiatric. It is a sad fact that a caregiver for someone with a mental illness can all too often be questioned in their “right” to seek support because the person they care for is “only” mentally ill. When Mr. Juniper developed his physical illness, it became easier to say that he had disabilities. It finally felt “legitimate” to say that he had disabilities.

Alas, I fear I have forgotten the point I was trying to make. Aha! It comes down to this, I think: It is all too easy for illness, conditions, and disabilities to become competitive. The Paralympics are among the few places where competition and disability ought to come into play. It is important to acknowledge that illnesses, conditions, and disabilities can be incredibly complex in their manifestations and ramifications.

A few words to bring this article to a close, perhaps? The xoJane article was thought provoking and I think the rawness of the writer’s experience contributed to that. I found the article sparked a few feelings, given the journey Mr. Juniper and I are on with mental illness and disability, though ours is different in that Mr. Juniper directs his struggles inwards. At the end of the day, this was an interesting reminder that everyone has mental health, and as such, everyone undertakes their journey differently.

By Juniper

Rarely to be found without herbal tea nearby. Team Unicorn. Often in pyjamas. Also: TEAM KATNISS!

6 replies on “Caregiving: A Response To xoJane (Fueled By Chocolate And Biscuits)”

I appreciate your perspective as someone who has had to define boundaries for yourself and your loved one. I also appreciate you touching a bit on the hierarchy of disabilities. Thank you for sharing your experiences.

The varying reactions I’ve seen to this xojane article really demonstrate how people interpret what they read based on their own experiences and postionality. Through the lens of my experiences as someone who has been on “both sides” of the issue brought up here, so to speak, I strongly identify with the author of the piece even as I empathize with the ex-boyfriend. I didn’t read it as her trying to excuse her actions as much as assert that they came from a very real place of mental illness. In any case, as a survivor of multiple abusers, all of whose abuse came from places of their own mental health struggles and/or abuses they endured, I understand how difficult it can be to extend any sort of understanding to others who have harmed you. And, I strongly believe none of us should HAVE to (though I would still criticize using slurs that reinforce systemic and structural oppression because we’re hurt). Indeed, I have frequently joked with others who are also survivors of a particular person’s abuse, and we say things like, “You know she’s crazy” to dismiss her antics these days. It’s one of the ways in which we have coped and survived. (Of course, we all struggle with mental illness personally, so it’s different than a neurotypical person calling someone crazy.) That’s all to say, as I said elsewhere, it’s complex and contextual.

Thanks again.

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