The Invisible Illness

I am not going to take my own life.

I say this to myself every day. Like an alcoholic choosing not to drink.

But I want to talk about it. If it’s going to be upsetting to you then, please, re-read the first sentence, and then perhaps give this post a miss.

Mental illness is talked about now. Suicide isn’t always seen as the coward’s way out. There is recognition that it’s an illness. But it still isn’t, and perhaps never will be, understood.

Because it is invisible.

Cancer. That’s another big killer. You can see cancer. You can see shadows on an x-ray. You can tell someone is doing battle by their scars: the hair loss, the weight loss. The look in their eye that says, ‘I’m going to beat this bastard, you see.’

And I’ve known people that did beat it. And some that didn’t.

But here’s the thing. It’s an ‘it’. It’s an intruder. It’s visible.

With depression, anxiety, suicidal thoughts, despair, ennui, whatever you want to call it, it’s ‘you’. It’s not ‘other’. It’s there inside your head. It sounds like you, thinks like you, it can control your emotions. It can make you cry uncontrollably. It can make you feel sick and shaky at the thought of dinner with friends. It can make you look at the river, every single time you walk past it with the dogs, and say, ‘Well, why not?’ So that the other you – and we all have several voices that chat in our heads, right? – the other you has to say, ‘SHUT UP. Don’t be so fucking melodramatic. I’ve got this. I don’t need to lie down and not get up.’

But imagine having to have chemo every day, with no one having a clue, not even nurses. Imagine that, on the occasions you wanted to say to someone, ‘Chemo makes me vomit, makes my hair fall out and my skin smell of chemicals and it’s horrid,’ but actually what you want to say is, ‘I see no point in living, I get up every day because I have to. I love my family, but that doesn’t fill the darkness inside. I stay because I know they would blame me if I went, but I just want to sleep and never wake up.’ Yeah, I can see how that would go. Selfish, much? Or, my favourite, ‘we all have days like that.’

Did you ever say to someone having chemo, ‘yeah, I had it yesterday, it’s a bitch right?’

My dad had chemo. He fought cancer and beat it. But he died anyway, of septicaemia. But do you know what I think actually finished him? He lost the will to live. Literally. It’s complicated, and it hurts to think of it, but certain events in the weeks before he died made me think that he had just had enough.

I know three people (or three people that have told me) that have lost loved ones to suicide. And I’ve heard that confusion, betrayal, despair. The, ‘Why didn’t they just ask for help?’ The heartrending, ‘What could I have done? Why did they leave when people loved them?’

I’ve felt some of that with Dad. I should have been there that weekend, when he got pneumonia. I mean, I actually should have been there, but we changed our plans. I’d meant to buy him a heater for his room, but for some reason (too expensive?) I didn’t. I didn’t find out he had died for two days. It took me years to get over that guilt. But I never once thought, ‘Why did he give up, he had family that loved him.’

Because the thing is, when it comes down to it, it’s just you and the illness. You’re not thinking in big pictures. Love can feel like a burden, because it’s anchoring you to a place you don’t want to be. When you drag yourself out of bed every day, to give yourself to others, in search of meaning, or out of duty, the love gets twisted, lost.

I’m better if I’m busy. If I don’t give the thoughts room to talk and grow and suffocate me, I can reach contentment. But, here’s the kicker: my illness makes work very difficult. I am easily overwhelmed. Noise can flip me over the edge. If I get tired, I get emotional and say things I shouldn’t to people that don’t forgive (or don’t know). I’ve had two ‘proper’ jobs in my life and I left them both because of my mental health. And so I’m frightened to go back.

Job adverts are all about ‘resilience’. I looked up resilience yesterday. It literally means, ‘to bounce back’. Well, I do that every time I have a panic attack. It takes a day or so, but I bounce back and get on with life. But it doesn’t just mean that, not in a workplace.

I read this interesting article – from 2002 but still relevant – How Resilience Works, from the Harvard Business Review.

resilience

The article cites three things required for resilience. 1. Facing down reality (basically not being overly optimistic). 2. The search for meaning (seeing life as part of a bigger picture). 3. Ritualised ingenuity (the ability to make-do with what’s around you to solve problems).

I’m pretty good at one and three, but two is a problem. I highlighted this quote:

“[M]eaning making is, most researchers agree, the way resilient people build bridges from present-day hardships to a fuller, better constructed future. Those bridges make the present manageable, for lack of a better word, removing the sense that the present is overwhelming.

The present is overwhelming. Yes, that’s it. I see no future without depression, no future where I’m not battling every day to find a reason to keep fighting, and so every day is overwhelming.

I then found a more recent article by the Harvard Business Review on Resilience, from 2016, (I told you it was the key term for business) called, Resilience is About how you recharge, not how you endure. It starts by explaining that resilience shouldn’t be about how long we fight, but how quickly we recover.

We often take a militaristic, “tough” approach to resilience and grit. We imagine a Marine slogging through the mud, a boxer going one more round, or a football player picking himself up off the turf for one more play. We believe that the longer we tough it out, the tougher we are, and therefore the more successful we will be.

The reason I left both my ‘proper’ jobs, the reason they broke me, was because they were relentless. Long days, high stress, lack of support, and an expectation that you were never ill. Leaving at 5pm was called a ‘half-day’. That was a decade ago, and I know (apparently) things are better now. But it’s still frightening. I once had a boss tell me to take a couple of days ‘to get a better attitude’ after I’d lost it at him. Turns out, he was on the money. I went hiking in the Lakes and came back rejuvenated. But the ‘get a better attitude’ part has stuck with me ever since. It was my lack, my failing, that was the problem, my inability to stand the pace.

The key to resilience is trying really hard, then stopping, recovering, and then trying again.

We are beginning to understand this. It used to be called a duvet day, which sounds terribly indulgent. Now it’s called self-care. It amounts to the same thing. Switching off. Literally. Turning off the phone, crawling into whatever space makes you feel safe, and disconnecting.

The danger for a depressive, however, is that’s the space where the voices hide. Lying in bed because you can’t function as a normal human being isn’t always restorative. So another kicker for resilience.

There are two memes on Facebook that I love at the moment:

jomo

I did this last night. Although joy is the wrong word. But I stayed in as a form of self-care. I had FOMO (Fear of Missing Out) too, because I’d been looking forward to dinner with my friends. But I turned off my phone, so I wouldn’t see all the WhatsApp messages, and I looked after myself.

The other one is key, though:

fien

My son asks me every five minutes if I’m ‘okay’ especially when I’m clearly not. I say, ‘I’m fine’ to reassure him. Yesterday I had to say, ‘I’m not fine, but I’ll be okay, please can you stop asking.’ Thankfully he’s the most emotionally mature eight-year-old and he understood.

Sometimes ‘Fine’ is the best answer I have. Because people don’t want to hear the truth or they’ve heard the truth so many times it gets tedious, or they feel helpless because they know they can’t make it better. People like to fix things. People like to fix people. It isn’t always possible.

When I explained to my friends last night, they were the perfect friends. “Tough” one response said, “You’ll be missed”. As in, we know it’s tough but we understand, and we won’t stop asking you to come but we won’t pressure you either. Perfect. It’s taken a long time to find friends like those, because anxiety doesn’t leave much room for friends.

Anyway, today is a new day. I am resilient. I bounce back. Thanks to those friends I have a plan, a future I can prepare for, that will help with the overwhelming now. I battle on.

But the next time you hear someone say a suicide is ‘the easy way out’ or ‘selfish’ or ‘cowardly’, send them my way, and I’ll give them some context.

The Fragility of an Even Keel

As you may have read in my last post, I was accidentally bitten by a dog at the weekend. Seemed like a pretty trivial if irritating thing at the time. But I thought I’d share how, five days later, I’m fighting off thoughts of not wanting to wake up tomorrow, and how fragile even the most level-looking keel can be when you battle mental health issues.

The bite was small but painful and, being on my thumb, I needed it to heal well, so went to the docs. Who prescribed a wide-range antibiotic, because dog bite apparently. The antibiotics (I think) caused cramps and a dodgy tum. I say I think, because my daughter’s been off school for two days with the same thing. It might have been the child at the docs with the sick bowl, or the pale lad slumped on the floor. Who knows? I just know that my daughter is never ill, and mine tends to be viral rather than gastric.

Regardless of the cause, the dodgy tum (or the antibiotics) has screwed up my SSRIs. I can tell because I want to break things and keep shouting and crying. Which has put the dog and kids on edge, so it’s been pacing and begging and ‘Mummy mummy mummy’ round the clock. They’ve even found me in my hiding place: the dog is outside tiptapping relentlessly under the window

There are a whole heap of other things thrown in the mix, least of which is the damn internet not working (kids can’t do homework, I can’t upload book files, hub can’t play Fortnite) but they’re every day annoyances.

Still, all in all, I’m going on holiday next week and instead of being excited I’m hiding in the spare room thinking of all those things you’re meant to think of, to stave off the ‘I can’t take this anymore’ thoughts. You know; how everyone needs you and loves you, and it’s a permanent solution to a temporary problem.

It doesn’t help.

For a start, it’s being ‘over needed’ that tends to make me desperate in the first place. I feel pressured to be the perfect wife and mother and the guilt of failure can be unbearable. Secondly, depression isn’t actually a temporary problem, it’s a lifetime condition. I never understood it when people said that. I guess if your end-it-all thoughts are because of a broken relationship or other ‘event’ it could be considered temporary, but not depression. It’s pretty bloody perennial.

So, anyway, I’m not going to do anything desperate. My tablets are working enough that I will hide and know that, if tomorrow isn’t better, the day after might be. I love my family and know that they need me, however much that feels like a prison sentence at times. I know that even if this post upsets them (assuming I post it at all) they’ll understand and forgive me. I know I have much to be grateful for and that kids grow up and leave home eventually (and apparently I’ll miss them). I know that, in the grand scheme of things, I’m probably not a failure for not cooking proper meals or giving my kids and husband all my attention, or for shouting at the dog.

Some are not able to find that perspective, I’m one of the lucky ones. It can be the smallest thing that triggers a cascade. And it isn’t selfish or attention seeking or dumb. It’s an illness that can take hold like sepsis and attack the strongest people like a cancer.

It’s morning now. I slept. The world is still a fog but I plod through, waiting for my medication to wrap me up again in my safety net. I wasn’t going to post this (no internet! Ha!) but if it helps one person breathe and hang on until the morning, or one person understand why a loved one couldn’t, then that’s enough.

And I hope one day to learn that I am enough.

A Note on Suicide

[Apologies in advance if this hurts my friends and family but I need to say it.]

There is a lot of discussion about suicide at the moment for obvious reasons. How it’s selfish. How people suffering from depression need to remember they are loved. Much of the latter is heartfelt and well meant. But.

I’ve struggled with depression. Struggled with suicidal thoughts. And yes, before my medication, I often thought my family would be better off without me. But now, when it happens, my main, overwhelming, sometimes only thought, if it can be called thought, is I want the pain to end. That’s all.

Perhaps that is selfish. But unless you’ve lived with a battle in your brain most of your adult life, you can’t really judge.

If someone going through chemo just wants it all to be over, you wouldn’t judge. And for many at least there is an end in sight. My depression is mild and mostly controlled, but even I sometimes can’t imagine living with it for another forty or fifty years.

So don’t judge, not even in kindness. Don’t tell people with depression to ‘think of their loved ones and how much they are needed’ because that IS selfish. How can being needed, being required to get up every day and give to others, when you are struggling just to breathe, lessen your pain?

It must be horrible to be on the outside. I’ve spoken to people who have lost family members to depression (and that’s what it is, succumbing to an illness). It’s awful. Just as losing someone suddenly to a heart attack or a brain tumour or septicaemia is awful.

And there is always the ‘what if’? I have it. I was meant to be staying with my father the weekend he died, rushed to hospital with septicaemia. What if I had been there? Would we have reacted sooner? Saved him? And that’s as valid for suicide I guess. Medical intervention might have helped. But telling a person they are loved, needed, required, precious, selfish, or anything else AT THAT POINT, I believe would be no more effective than it would to tell someone to stop having a heart attack.

I would love to end this with an answer, a right way to help sufferers of depression. I don’t have one. Except actions speak louder than words. For me, the friends that showed up and put the kettle on, watched the kids for an hour, walked the dog, those were the ones who helped me survive PND. Don’t wait for the sufferer to ask for help. Often they can’t, the darkness won’t let them. Take a risk and just show up. And above all, don’t judge.

The Rest Is Silence

*Trigger alert – talk of suicide and depression*

What terrible news to wake to, that Robin Williams lost his battle with depression. I write it like that on purpose, rather than ‘he took his own life.’ He didn’t. Depression and addiction took his life.

I have read so many heartfelt posts and social media statements this morning, saying ‘what a waste’ and ‘if only he’d sought help.’ And I can’t help but feel the need to defend his actions. He clearly did seek help, just as a cancer patient will seek the best care. But sometimes it isn’t enough.

My father died of pneumonia when he was 58, after battling cancer for several years. I believe part of him gave up the fight. But no one would say he took his own life, or blame him for refusing to live with the pain anymore. We think depression can always be treated but sometimes the drugs don’t work. Therapy doesn’t work. Knowing the world loves a version of you that maybe isn’t the complete you surely makes it worse. Knowing you bring joy to millions but not to yourself. I can only imagine how lonely and painful that might be.

So I will mourn his loss, and celebrate his greatness, and hope his suffering may cause others to seek help and live to celebrate another day. I hope people will recognise Depression for the debilitating illness it truly is, rather than a weakness of character.

Many speak of failed suicide attempts giving them new life and new purpose, and I am glad that is true. Matt Haig often writes of surviving suicide and I am grateful he lived to pour his pain and experience into The Humans. But how many more woke determined to try again? There should be no blame, only an attempt at understanding. Robin Williams battled an illness and lost.

Rest in eternal peace, Robin Williams, I hope you have defeated the dark dog within and can walk free.

World Mental Health Day: 2013 365 Challenge #283

As part of the Claire instalment for yesterday, I needed to research the aftermath of a suicide attempt.

I wanted to know the practical things, like how long someone would have to stay in hospital, would they automatically be moved to a secure ward, would they be discharged etc. It’s a difficult thing to research; the NHS doesn’t have a page on ‘so you’ve taken an overdose’. I’m fortunate that no one I know has taken their own life, or tried to (to my knowledge). I hadn’t intended for one of my characters to do so, but sometimes the story writes itself.

The difficulty as an author is how much you delve into the research, what it takes out of you, and how much of the dark detail to share (what is appropriate for the story genre)? Writing about Claire’s depression hasn’t been too hard, because I periodically suffer from depression myself, albeit mild in the grand scheme of things.

I also follow some amazing blogs written by people who suffer from depression or anxiety; courageous bloggers who offer up their story and share the hardest moments (Mummy Loves to Write, The Belle Jar to name just two). It is important to write about it, for me: to de-stigmatise mental health issues. But I do worry that my writing ends up too realistic, too dark and depressing, particularly the Two-Hundred Steps Home instalments, where I can’t go back through and edit some humour in to lighten the dark patches.

Baby Blues and Wedding Shoes grew out of a need to be honest about the hard parts of being a parent, after finding myself surrounded by people putting on a brave face and telling me that I had to do the same (I had my mother, health visitors and doctors all tell me I was too honest. Thank goodness for blogging.) I did try and put in the funny stuff too, (Helen dropping her breast pad in the coffee shop was one of my experiences that I look back on and laugh) but the ‘baby blues’ part of the title is important.

As part of my research into suicide, I came across this on Reddit: Survivors of Suicide, what happens after you find yourself still alive? This was posted 20 days ago and there are 1857 comments.

Just reading through for an hour left me shaken and teary. My post ended up being three hours late because I became immersed in the lives of the people who had poured out their darkness onto the site. I deliberately skimmed through: I was emotional enough without getting dragged into the trolls and people who thought it was funny to be flippant. However I read enough to come away with a determination that, one day, I will write something about this awful subject. It won’t be chick lit. It might not even be publishable. But what I read left me so horrified I feel a need to tell somebody.

You see, what I came away with, from post after post, was how badly these people were treated. Either by the ambulance crew, who laughed at them or treated them roughly, or the hospital and psych ward staff, who treated them like animals. The friends who felt betrayed because they’d kept their depression a secret until it was too late. The people who said that suicide is the coward’s way out, or a cry for attention. So many stories of society’s failure to understand mental health illnesses and their repercussions.

There were uplifting stories too. One person wrote [sic]:

“The thing is.. if you talk about suicide people want to help you and talk you out of it. If you succeed they will talk about you as if you were the greatest guy on earth and they would’ve done anything to help you. If you try and fail… you’re nothing. A loser with a wish for attention. Or an ungrateful bastard wasting their time. Almost as if everybody’s angry for you failing to die.

I remember waking up the day after my half hearted attempt at roadkillness and realising that this would not have happened if I had died. That day I saw a nice show on TV. Later a movie came out that I really loved watching. I had sex, I stopped doing drugs, a girl told me I had a nice smile.. those little things did it for me. And still do.

I still think of ending it. Just end my meaningless speck of existence in a vast universe that will never know we were ever here after it all ends. Everytime that happens I try to think about something to do the next day. My boys waking me up, my wife hugging me naked before she hits the shower. Sometimes I look forward to a morning cup of coffee or a nice dinner. Weather forecasts are great, tell me the sun will shine and I want to see it.

I try to grasp those little things, because if I had succeeded that day, if I had tried harder, timed better or had less luck… I wouldn’t have lived those moments.

And God Dammit I love those moments more than I hate life.”

How powerful is that? There’s a whole life there, in a comment on a forum. There were hundreds of stories like his. Other stories, too, about abusive relationships or ongoing problems. The physicality of taking charcoal to empty the stomach and the other things that are done when someone has taken an overdose. Or the difficulty of living with a mental illness when you are afraid the people around you can’t cope and so you don’t share it with them. Or having the people around you cut you off completely because they don’t know the right thing to say or do.

One commenter wrote:

“If you really love someone, don’t cut the cord. Go to NAMI support groups for people who love someone with mental illness. Read books. Go to therapy yourself if you have to. If you love them, don’t give up on them. And remember–no matter what a person is capable of, contentment with life is more important than any potential they’ve “squandered” by suffering from a mental illness.”

Today is World Mental Health Day. Last year’s focus was on raising awareness around depression and seeking to de-stigmatise mental illness. This year’s theme is the positive aspects of mental health in later life. It was noticeable to me, reading the comments on the reddit forum above, that many of the people talking of having attempted suicide were young – teens and twenties. It comes as no surprise to me therefore that it says on the mental health website, “on average people aged 55 and over have greater life satisfaction than people aged 25-54”.

I’ve noticed as I get older that my ability to find perspective, to find the positive, and to be confident enough to enjoy life, is growing. Maybe if I do write a book on suicide, it will be a young adult one. Does anybody know of any books that have covered this subject? Sorry, this has turned into a rambling post. Thanks for listening.

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Below is the next installment in my novel Two-Hundred Steps Home: written in daily posts since 1st January as part of my 2013 365 Challenge. Read about the challenge here.You can catch up by downloading the free ebook volumes on the right hand side of the blog:

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Claire strode across the car park, muttering prayers under her breath. She could see Kim still slumped forward on the picnic bench and thanked the gods that at least she hadn’t run off or stepped in front of a lorry.

Pulling on her last reserves, Claire hitched on a smile and forced herself to walk slowly for the last few paces to her friend.

“Here you go,” she said brightly, hoping Kim couldn’t hear the fake smile in her voice. Kim glanced up to see what was being offered.

“I can’t drink caffeine,” she said, the words falling like autumn apples to smash on the floor.

Claire inhaled deeply. “It’s not coffee, it’s a hug in a mug.” She sat next to Kim and pushed the paper cup towards her. “Go on, you know you want to.”

Kim turned and stared suspiciously at the cup. Then the frown lifted and her lips turned up slightly at the edges.

“Hot chocolate? I haven’t had one in years. Hot chocolate is for kids.” But she took the offered cup and wrapped her hands around it, as if they were in the grips of winter rather than basking in a pleasant summer’s morning.

“It’s full of sugar and warmth and memories. It will make you feel better.” Claire took a gulp of her latte, burning her mouth.

Serves me right for suggesting depression can be fixed with a hot drink. Idiot.

The girls sat without talking. Claire saw from the corner of her eye that Kim took a sip of her drink and then another. The green pallor in her cheeks faded as the warmth and the sugar got to work. Claire felt one knot of tension unravel: it wasn’t much, but it was a start.

After half an hour, Kim sat up straight and looked around, as if surprised to find herself in a service station car park.

“Where are we?”

“Toddington Services.”

Kim managed a laugh. “I’m none the wiser.”

“Sorry. We’re on the M1, about a third of the way to Dorset. What do you want to do? Are you okay to go on, or do you want to go home?”

Kim released a pent-up sigh; puffing the air out from her cheeks as if she were trying to blow away the dark clouds.

“Fuck knows.”

The emptiness in her voice made Claire flinch. Without thinking, she put her arm around Kim’s shoulder, gripping her tightly and ignoring the unusual feel of bone under her hand. The shoulders began to shake, and she realised Kim was crying.

“Shhh. It will be okay, I promise. We’ll figure it out.”

“How?” Kim’s voice shot out through the tears. “How will it ever be okay? I can’t have kids. You don’t want children: you can have no idea what that means.” And she pulled away from Claire’s embrace.

“I’m trying to understand, Kim. And I don’t know about the kids anymore. A lot has changed for me, too.” She wanted to continue, but managed to hold the words in. Instead she tried to think of something to say that wouldn’t fan the flames of Kim’s grief.

“There are other ways. You could adopt: there are babies all over the world who would love to have you for their mummy.”

“But they wouldn’t be my babies.” Kim’s sobs grew stronger, her slender body shaking like a leaf in the wind.

“What about surrogacy, then?” Claire had no idea whether it was possible, but she wanted Kim’s tears to stop. They made her feel helpless.

“Jeff and I don’t have the money for something like that; we’re not rich like you.”

Claire laughed bitterly. “I was never rich. And now; now I don’t even know how I’m going to pay back the credit card company, before they try and find something to repossess. I’m broke.”

Kim looked over, one eyebrow raised in disbelief and Claire bit back the sudden desire to yell at her friend that she wasn’t the only one with problems. Her financial predicament was of her own making and paled into significance next to Kim’s woes.

“I’m serious,” was all she said. “I’d barely cleared my debts by the time I decided to pack in my job and fly to New Zealand. Those weeks as a gullible tourist, spending money left and right, has maxed out both my credit cards. If I don’t start work for Conor this week I’m totally in the shit.”

Kim’s eyes narrowed, as if she found the concept of a poor Claire too hard to fathom. Then she wrapped her arm around Claire’s waist and squeezed.

“Then we’re both in the shit together. We’d best get shovelling.” And she smiled.

It’s true, Claire thought wryly, as she returned the embrace, misery does love company.

***