Where did you go? Loving someone with a mental illness

Updated

Mental illness can be a rollercoaster. And when it's someone you love, you're strapped in together.

Scott and Maggie

Scott was seven years old when he first saw his aunt Maggie in a hospital bed, recovering from what he now knows was a schizophrenic episode.

There's a picture somewhere of handprints that he and his younger twin brothers made on the photocopier in the ward.

"I guess there weren't a lot of activities for three little kids in hospital so that's what we did with Maggie in there."

"Ah yes," remembers Maggie, who raised Scott and calls him her son. "You were just a little tacker then."

Scott remembers Maggie as a shell of herself. It was scary, for a kid.

"You see Maggie in her day-to-day life, she's having meetings and she's a powerful woman. And then you see her in the hospital and it's like going to visit Auntie Val who has dementia.

"I didn't really know what was wrong with Maggie. I was just a toddler. I was told chemical imbalance in her brain, but I didn't understand what that meant until quite a lot later."

So much did Maggie shield Scott that now, as a 28-year-old man, he wonders whether he's actually ever seen her in the grip of an episode.

"I don't know," he says, turning to his aunt. "What do you do when you stop taking your medication?"

"It's not good," she says. "But I guess we protected you from that. That was my choice to protect you from that."

Disconnected

As a result, Scott has a hazy understanding of how schizophrenia affects his aunt.

"I don't see it affecting her that much. Maggie had cancer earlier in the year and she's just like, 'I've got cancer'. I think that's her approach. It's not that big of a deal.

"I think for Maggie it's more about the effect her schizophrenia has on her partner that she worries about.

"I think people assume people with schizophrenia are dangerous a bit and I don't think people necessarily are, from my experience with Maggie anyway. They're normal people. They can be funny."

Here, Maggie interrupts.

"You're right, not everyone with schizophrenia is dangerous but there have been times when I've been really dangerous that we just best not tell you about. But that's because we loved you."

"I don't know if that's always the right way to go about it," Scott tells his aunt. "Like, I'm not a little kid now."

Witnessing only the before and after has created a disconnect for him.

"If I have to see you when you're at the hospital then I think it would be good to know what led to you being at the hospital.

"Because that's really bad, really distressing. So if I have to see that bit anyway then I might as well know about the whole thing."

'The whole thing' is a lot to take in.

Maggie has been having schizophrenic episodes since she was 13.

Yet she didn't see a psychiatrist until she was 40.

"My family, culturally — we're Maori — just absorbed that behaviour and what I now know were psychotic episodes."

At 58, Maggie hasn't been to hospital for the past eight years. But for the entirety of her forties, she was hospitalised three times a year.

"I take lots of medication and providing I take it, I'm pretty okay. I'm on oral and injected antipsychotics. I always have the depo injection, sometimes I don't take the oral. Because you just feel good and you think, 'Oh I don't need it anymore' — the classic line.

"Then I can become quite unwell in a matter of days, like eight or nine days, and then I'm seriously dangerous."

"I don't become suicidal, I become homicidal.

"But I hear voices 24/7 on the medication."

Even now as we sit here talking?

Yes. All the time.

"They're always yelling and screaming and telling me to do things that are just not normal. The dogs can talk to me and they can tell me to do things as well.

"I've learned how to switch the voices almost off when I go to work but the minute I'm in the car going home they come back again.

"My partner has been very scared in the past because I've been really dangerous. And I fear for my loved ones. They're my heart so I'm just very mindful of where I'm at with them so that no harm comes to them. I've got paranoid schizophrenia so I can be really paranoid that other people are going to hurt them too, which gets me on alert."

Keeping the voices at bay is exhausting.

"I'm often tired. But other than that everything cruises along. I've got a pretty matter-of-fact way about life. Them's the breaks, this is what you've got, so get on with it.

"I'm very fortunate that I work in mental health and I work for an organisation where everyone has mental health issues so I don't need to tell my story to them. Which is really good."

Scott thinks having Maggie in his life has made him more understanding.

"I'm more patient with people, especially if they have a noticeable issue. I work in retail, and when my co-workers might walk away from someone who looks a little crazy, I'm quite happy to have a chat to them."

Kristin and Hilary

When Kristin met Hilary she didn't look depressed or bipolar. Whatever that looks like.

She was radiant. A whip smart doctor with an Irish accent that curled around your ears.

"We met and I was smitten. I was just short of 50 and she was just on 50 and I don't think either one of us expected anything very dramatic to happen. And then it did."

Kristin — herself a transplant from Chattanooga, Tennessee with a soft Southern drawl diluted by years in Australia — was in Tasmania to launch a book of her poetry.

It was the stranger-across-a-crowded-room cliché.

When Kristin's eyes lit on her, Hilary was standing in a small group. Red shirt, pale hair tied back. So tall she was tilting her head to hear the conversation.

"She just looked extraordinary to me. Statuesque, slightly androgynous. Different from the more ordinary people around her.

"She looked ethereal but acted earthy."

At a dinner that night Kristin was transfixed.

"I was like a teenager, completely tongue-tied," she remembers. "I couldn't do much more than look. I enjoyed watching her tear into some venison.

"I didn't sleep at all that night."

To this day they laugh about a message Kristin left on a friend's phone. "I said, 'Something weird is happening to me. I think I'm in love — with a woman.'"

Kristin had a husband at the time — "For about five more minutes" — and so there were some painful decisions to make.

All that is 20 years ago now.

In their seventies, the couple has weathered the storms that come with bipolar disorder.

From the start Kristin knew Hilary had struggled with depression. But it seemed long in the past.

What came as a shock was the upswing that accompanied the down.

When she wasn't depressed, Hilary could be high as a kite.

"It all happened really quickly so in a sense I didn't know what the real, normal Hilary was. I thought, 'Oh wow, high energy girl,' you know. When I met her she was losing sleep and vainly I thought that was because of me," Kristin laughs.

In truth, Hilary was emerging from a deep depression, self medicating with alcohol and pot.

Kristin was seeing dramatic, inexplicable changes in the woman she'd fallen in love with.

The empathetic, wise, sensitive Hilary would disappear, replaced by someone who was callous and could be quite cruel. Irritable, domineering, impatient. Inconsiderate and unsympathetic.

"When it was really bad I didn't know what I was coming home to. It's really like having another person there.

Gone were the long, meandering conversations that Kristin loved.

"Like standing in front of a steam roller" is how Hilary describes what it's like trying to interact with someone who's in the high phase of a bipolar episode.

"You just think everybody else is slow as anything and they can't think as fast as you can, or talk as fast as you can.

"Afterwards you have a perspective on that but at the time you just think, 'I'm having a good time, get out of my way.'"

"When you say high, people think, 'Oh that sounds pretty cool,'" says Kristin.

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"But it involved waking up in the middle of the night, agitation, not great judgment about things. And all the time I was trying to figure out: that's not what you were like yesterday, I don't understand."

It was a rollercoaster.

"My head was spinning," admits Kristin. "I don't know whether I really thought of it as being bipolar. It was more like: I don't know who you are. I tended to blame it on the booze and the smoke. But then after a while I guess I realised they were all connected in some way. And so I really was always trying to work out: what particular thing am I dealing with?

"We talked about splitting up about every 10 minutes but we didn't, we hung in there. There must have been some kernel of Hilary-ness and Kristin-ness that kind of connected."

That's been the hardest thing.

"That sense of losing her. Just losing her. And not knowing how to get her back. And also, because of some of the things she said, not being sure she wanted to come back."

'Like disappearing'

You quite like me depressed. I'm easier to handle that way.

Hilary said it to Kristin during an episode that struck when they were travelling overseas.

"I thought, if she thinks that's true, if she thinks I hold her down from this energetic, bubbly, vivacious way of being - that's how she would have seen herself - that's not good."

It was on the tail end of the same episode that Hilary told Kristin she'd been suffering from low-grade depression for the past decade of their life together.

Kristin was crushed.

"It was terrible. I felt like my happiness had been built on a lie."

"I'd thought it was the best time of my life. For me it was so blissful. I thought, 'This is how I want to live forever.' We were so companionable. We'd talk and talk and talk and talk. I didn't realize she'd been depressed, I thought she'd just calmed down."

When someone you love has bipolar, it can be near-impossible to decipher where the person ends and the illness begins.

God knows, Kristin has tried.

"I don't know what's true and what's not true. I'm never sure whether the veneer of sensitivity has been scratched away (when Hilary's high) and I'm getting the truth or whether it's a distortion.

"If you've got some physical thing wrong the core person that you have the relationship with can still be there. Obviously you're affected emotionally and mentally by physical ailments but you don't disappear altogether. That's what this is like."

A policing mentality

Kristin recalls boarding a plane with Hilary in Prague, a few weeks into their trip.

She'd noticed Hilary becoming quite argumentative.

She hadn't been drinking to excess this time, but there was a lot of coffee.

"She was yakking away while I was reading and she said, 'Am I raving?' and I said, 'Oh, well, you're talking a lot.' And she said, 'I think I'm going high.' And that actually hadn't even occurred to me. It had been so long. I thought, 'Why are you acting so revolting?' but I hadn't thought about that. And when she said that I thought, 'Wow, that's some insight, we're gonna get through this okay.'

"But that was the last time and it really just went wah wah wah wah after that."

The partner of someone with a mental illness can tend to get overlooked.

"The attention is definitely on the person who obviously needs some help and who's manifesting symptoms.

"It's like when you've got a partner that drinks a lot and people tell you, 'Stop being such a nag, they're the life of the party.' But they don't go home with them. Without trying to be too self pitying, I can't be the only one who doesn't know what to do.

"I don't know how to handle it. Nobody's ever told me."

When Hilary is in the throes of an episode, Kristin finds herself turning into a detective or a suspicious parent.

"Because the highs are often kept topped up by alcohol and other things I find myself on the lookout for telltale signs.

"I hate this policing mentality. Hilary hates it too, of course. It's not the person I want to be, certainly not the partner I want to be, and I resent feeling that I've been placed in this position. It erodes any kind of equality between us, or trust. It's very destructive to both partners as well as the relationship."

Taboo

When the women first got together, Kristin remembers 'bipolar' being a kind of taboo word.

Yes, she knew about Hilary's history. But her mental health wasn't something they discussed as a shared problem they needed to deal with together.

Hilary had been keeping her illness pretty much to herself all her life. In her medical career it wasn't something she publicised.

That approach transposed to her personal life.

"It was like this big no-go zone," says Kristin. "It was very isolating.

"I knew if Hilary wouldn't talk about it to me, I wasn't supposed to talk about it to anyone else. And I didn't want to malign her. This is the person you love, you don't want to complain about 'em. And it's hard to share your experience with other people when you don't have a united front about it yourselves."

Of course, people noticed anyway.

"After this recent breakout, or whatever we call it, I said to Hilary, 'I have had enough of doing this on my own. I know we share the same friends and I'm sorry about that but you tell me who you definitely don't want me to talk to about it because I've got to have somebody. I've got to have a friend.' And Hils, to her credit, said, 'You do.'

"There's no point blaming Hilary because she can't help it but it's things like saying, 'Ok, this is what I need for me and I'm going to get it because I know that you can't look after me. And I have to look after myself.'"

That's her advice to others in this situation.

"Don't let it be a secret. That doesn't really help either one.

"And you find out when you do share it with people that there's nobody who hasn't been touched by something. And people just care.

"And look after yourself. Figure out that you don't have much control over what the other person's going through, how long they're going to be going through it or anything.

"Figure out what you need to not go down the plughole yourself and insist on it. Nevermind insisting on it to the other person, they're not listening anyway - but just to yourself."

Laughter is something there is a lot of between the women.

They laugh about the side benefits of bipolar: how when Hilary's on a high the kitchen and garage are both cleaner.

They laugh about the way some of the symptoms mellow when you're in your seventies.

"She's too old to be promiscuous and she's not going out gambling our life away. She spends a lot more but she does it at the op shop. So thank heavens for small mercies."

"Never been a big spender," Hilary chips in, a smile on her face that's halfway between sheepish and mischief. Her eyes glitter.

Emotional see-saw

For Hilary, mental health has been a lifelong see-saw.

"People don't really understand what it means to be depressed. They think you're just sad. You're not, you're more empty than sad. They don't understand the high, they think, 'Oh that's great, you're having a good time,' and to some extent you are. But you're also aware that you're very difficult to be around."

Bipolar made its first incursion into Hilary's life when she was 18 and had just completed a stressful first year at university, studying maths and physics.

"It was depression with delusions and really I was psychotic. It hit me like an express train out of nowhere.

She was in Belgium with a pen friend.

"I didn't know what was happening to me. I just knew I needed to get home. Got to London, sat in a railway station on a bench and I believed that I'd done something terribly evil and that's why nobody would sit beside me on the bench.

"I rode the trains pretty much all day, tried to work up the courage to throw myself in front of one. Well, I didn't. I think some little bit of me still felt that would be a terrible thing to do to my parents, so I rang my mother.

"We got back to Northern Ireland and she took me to a psychiatrist and I said, 'No point in my talking to you,' because I believed people could read my thoughts."

It went on for six months.

Afterwards Hilary put the whole thing down to trying too hard, a perfectionist streak run wild. She resolved to moderate those tendencies, considered herself cured.

It was three years before the near-death of a friend in a diving accident catapulted her into a week-long high.

"I didn't know that's what had happened. I was just not sleeping. I was listening to music, I was writing poetry."

Things unravelled when Hilary began thinking she could affect the weather and that the weather was affecting her. Feeling unsafe, she signed herself into the teaching hospital where she was, at the time, a medical student. One way to make your problems public.

There were three different diagnoses including encephalitis before doctors realised what Hilary needed was a psychiatrist.

In between times there was a trip to India and a decision to drop out of medicine only to later re-enroll. All in all, Hilary was high for most of a mixed up year.

The Troubles had just begun in Northern Ireland, and the upheaval fed into Hilary's delusions.

"I thought I could personally solve the peace process by riding my bicycle up and down between the Falls and Shankhill Roads in a paisley shirt."

She and Kristin have a good belly laugh over that one now.

Hilary's had electroconvulsive therapy, swallowed lithium ("It felt like a mental straitjacket, it was horrible.") and made elaborate plans to end it all by sailing a boat into the middle of the Derwent River and drowning herself. ("I was going to make it look like an accident.")

For all the treatment and the drugs, one thing has always helped. People.

From the university professor who recognised her erratic behaviour to the staff in the private hospital where Hilary recovered as an 18-year-old.

And here she is: 71, approaching a happy medium and feeling the love of a good woman.

Paul and Xenia

There's a spot that Paul likes to sit in the front yard, obscured from the street by a tangle of gnarled Tea Tree and lit perfectly by the late afternoon sun.

It's here that he reclines, arms behind his head, as his wife Xenia stands on the path, pots of lavender dangling from her fingertips.

Paul discourages her from planting them neatly along the pavers.

"It's too Anne of Green Gables," he says.

He's never been seeking a picture-perfect life.

From the oak tree that's sprouted in the middle of the lawn from an acorn his daughter threw there as a six-year-old, to the old peeling bench he's sitting on, headed for the tip until the couple salvaged it. Even the sofa in the living room that's currently baring its bones, sans cushions because they're at the upholsterer.

Life can be like that. Haphazard.

That the couple even lives where they do is a surprise.

They bought the house by accident at auction after making a spur-of-the-moment opening bid, one they felt sure would never succeed.

Where the person ends and the disorder begins

Nobody plans to be struck down by anxiety or depression.

It was when Xenia couldn't get out of bed that Paul first suggested she investigate her mental health.

"It was the sleeping a lot that caused me to say, 'I actually think you need to look at whether you have depression.'

"I was feeling put upon because I was basically single parenting. When the kids are little it's full on."

Until then, Paul hadn't really regarded Xenia's fluctuating moods as a 'mental health issue'.

"She was lively and out there. It was one of the things that was attractive about her, that she was a little bit unpredictable. I just thought it was part and parcel of her personality.

"I just saw it as someone who panicked a bit. I think everyone gets panicky when things are stressful."

The couple had met and married within four months. Whirlwind, yes.

"I was already in my forties and the first thing you think when you're 40 and still single is, 'I wonder how many children she's got'. But she didn't have any and she was single like me.

"All our friends were running a book on how long it would last."

It was when their youngest daughter was a baby that Paul remembers really noticing the anxiety.

"The baby would get croup and Xen would immediately say, 'We've got to take her to Emergency,' and I would be like, 'Yes, she's unwell but we're not going to Emergency.'"

This followed an anxious pregnancy where Paul had been constantly having to calm things down.

As the panic became a pattern, it did cause friction.

"Dealing with someone who is in a panicky state is difficult. I would see it as overreacting and say, 'Would you not do that?' and we'd end up having a squabble about it.

"It throws back on me," Paul says. "I'd think, 'Wait a minute am I being too blasé about this? Am I being an uncaring father? Is my judgment right?'"

Asked if anxiety and depression limit their life together these days, the couple answers simultaneously.

"No," Xenia says — at the same moment her husband answers the opposite.

"I'd say it does," he repeats.

"There's times where it's a beautiful day and you want to go for a bike ride and it just doesn't happen because she doesn't have the motivation or she's just feeling flat," Paul explains.

"It used to make me angry but now I accept I can't change that."

He says the depression is worse than the anxiety.

"For me depression is the bigger issue because that's the one that affects the family and me more.

"She just crashes."

Missing ingredient and a blind rage

The family remembers one occasion when Xenia was in the kitchen prepping for a meal with friends, and lost it.

"It's not just the normal 'get anxious because the mussels aren't opening properly'. This was blind rage, white-hot anger."

Paul and his 13-year-old daughter were quick to volunteer to go to the supermarket for a missing ingredient.

"We were driving around looking for something that was open on a public holiday. I remember my daughter saying, 'I'm sure there's one on the other side of the city we could go to.' Neither of us were in a hurry to get home.

"Combined with two daughters going through puberty, I do have those moments of fantasising about picking up the passport and just disappearing overseas."

A sense of humour goes a long way.

It can be lonely loving someone who's wrestling with anxiety and depression.

"At times it can create quite a chaos inside my head," says Xenia. "It takes a lot of energy to ensure it's not noticeable. It's like you have a constant radar where you're monitoring yourself, the situation, other people. I have to do what I need to do then withdraw."

"All your sensitivities are heightened. It's mentally and physically exhausting. I need a lot of solo time to let it settle and just unwind."

The bouts of depression are cyclical, swinging around every few weeks.

"I think Paul feels very alienated and shut out sometimes because I will shut down.

"Yeah I do," admits Paul. It would be worse if he wasn't himself an introvert.

"Luckily I like being on my own but there are times when it's difficult and you just think, 'Well, I hope we reconnect again soon because there's stuff I want to talk about.'"

Warning signs

Paul has become finely attuned to how his wife is tracking, mood-wise.

"It makes a huge difference to me that Paul is able to say, 'I'm worried and I can see that you may be going down an unhealthy path."

There are warning signs, often noticed by Paul before Xenia.

If she stops going to the gym.

If she stops riding her bike.

If she's sleeping more.

If she's spending increasing amounts of time on social media.

"I don't know what's going on (with the correlation to Facebook et cetera) but it seems to be a sign that she's not happy in her own self or mind."

What's happening when she withdraws or becomes absorbed in social media, Xenia says, is fear. Overwhelming and consuming fear. Of not being good enough, of not being perfect.

Scenarios of life-yet-to-happen will have her awake at 4am, mulling over things that have happened or something coming up. Panic sets in, then inertia. A predictable array of behaviours play out.

"During bouts of extreme anxiety I may appear disorganised or disinterested or disconnected and yet I have rehearsed and ruminated for days.

Some things you just have to live with. Adapt.

At her daughters' basketball games you will find Xenia perched in the far reaches of the grandstand.

"I remove myself and watch on my own up in the corner. The kids thought it made me stand out."

"They said, 'Mum it makes you look like a loser loner,' and I had to talk to them and explain that that was the only way I was able to go.

"Otherwise I do start to have panic attacks and it becomes quite debilitating.

"It's not me sitting down with the kids and saying, 'I have anxiety.' It's saying, 'This is me,'"

"Oh, have you got a mental health diagnosis?" Paul asks, in mock surprise.

"You know I do…"

But he's making a serious point.

"I don't think of Xen's mental state as mental illness. I just think, 'What mood's she in today?' That's the way the kids are too. They'll just say, 'Mum's like this,' and I'll say, 'Yeah, she is.' Just like people have headaches from time to time.

"I think we see a high divorce rate and a high turnover in relationships because people are looking for a fantasy and if it doesn't work out they swipe left. I don't think that's a great thing.

"Everyone has a right to be who they are. If anxiety or depression is part of who they are then they've still got that right.

"The only time you've got concerns is when it becomes pathological, and then you need to support them in that."

The fact that Paul works in public health and is regularly exposed to people who're unwell has given him perspective. At one stage he was every day seeing cancer patients who were in the midst of chemo.

"A lot of people go through a lot of stuff and this (anxiety) is just another thing you have to deal with."

Stigma, still

But what about Paul? Where does he go for support?

Mostly, he turns inward, embracing meditation and mindfulness and making his own self care a priority.

He did see a psychologist a few years back.

The help wasn't offered. He had to seek it.

"Whenever there's a traumatic event, counselling is offered. I don't know if that's the case when people are supporting people with mental illness and whether stuff is offered early enough," he says.

"It'd be easier to say my partner's been diagnosed with cancer or been injured in a car accident. It fits in a nice box.

"When you say, 'My partner suffers from anxiety or depression,' it's, 'Oh. What's wrong with her then?' They don't understand what that means."

Not so long ago Xenia went through a particularly rough period and 'came out' to her friends as an anxiety sufferer. That's what it was like. A confession.

Xenia found that once she told her friends what she was going through, others disclosed their own struggles with mental health.

"We're all high functioning professionals yet internally we're dealing with this," says Xenia. "But stigma's going to keep us quiet."

A few years ago she was hospitalised.

"You go into a general hospital ward, there are flowers and GET WELL cards everywhere. If I was sick in that way, people would say to Paul, 'Can I come around and cook you meals or help with the kids?' But because I was in a psychiatric hospital, no one quite knew what the protocols were. People might quietly whisper to you that they're going through the same thing. But they don't want to say it out loud."

It hadn't really occurred to Paul before this moment, the stigma.

But here he sits, hesitating to reveal aspects of his wife's experience.

"It brings home to me the awareness that the stigma is there. However much we try to intellectualise it, it's still a thing."

The stigma is probably worse than the symptoms, says Xenia.

It's why she's trying to be as honest as possible, though it's personal.

"If we said no to this interview, we'd be buying into that stigma."

Paul believes mental health struggles are more widespread than is acknowledged.

"They say one in four people will have a mental illness in their lifetime, in terms of coming up against a diagnosis.

"I'm not a big fan of the notion that 75 per cent of people are 100 per cent hunky dory.

"I'd say everybody has to deal with mental health issues.

"The same way we have to look to stay fit and eat healthy, we have to work on our mental health.

"Everyone's got stuff going on that can make for good or make for ill. It's just about being kind. Just take a minute to see where other people are at."

That kind of acceptance makes a huge difference to Xenia, who never has to feel defined by her anxiety and depression.

"Paul recognises it's a part of me. It's not who I am, it's just a part of who I am.

"The kids just think, 'Oh, that's Mum.'"

Thanks to the Victorian Mental Illness Awareness Council for making this story possible.

Topics: mental-health, health, family, family-and-children, community-and-society, diseases-and-disorders, depression, anxiety, psychosis, melbourne-3000, vic

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