Getting honest about suicidality in chronic illness

Content warning: Suicide, suicidal ideation and descriptions of suicidal ideation


I’ve talked about a lot of things with my friends and family (and anyone on the internet who wants to know how my bowel condition is going). I’ll talk about my haemorrhoids to anyone who asks. I’m a bit of an open book if people are asking questions (for better or worse) and I’m quite proud of that openness.

But one thing I’ve never gotten very deep into is the depression that is linked with chronic illness and how that can dive into the realm of suicidal thoughts, ideation, plans or worse.

I guess I’ve never felt qualified to talk about it since it’s such a sensitive topic for so many people. NZ is one of the worst developed countries for suicide and the worst for youth suicide. It’s a serious issue over here and I’ve always felt separate from that – very luckily.

However, the more I think about it, I am guessing that that’s probably how a lot of people think. “My pain is probably not as bad as others’, it’s not my place to speak”. Or, “It’s only been thoughts and I’m not going to act on them – it’s not the same”.

But now I’m thinking…. maybe I am sort of the same as others. Maybe there are others the same as me, but maybe they could end up getting worse than they expected they could, and that’s how we end up with these upsetting statistics. Maybe I could?

I want to break my silence, take a breath and talk about my own experience with suicidal ideation.

I don’t want to compare my situation to anyone else’s as I do feel like I sit at the mild, manageable end of the spectrum. But I think it’s important to talk about our own experiences with depression and suicidal thoughts since there is still a stigma around it despite it clearly being more common that we like to admit.

So here I go…

I’ve always been a pretty happy, positive, optimistic person. I kind of pride myself on that.

It’s my coping mechanism. I laugh when I talk about the worst things that have happened in my life. I’ll try make others laugh about it too.

“My gut issues are making my life a total 💩 show”

“Time to evict the parasite who’s been stealing all my food! 🦠 🙅‍♀️”

“I’ve lost so much weight, I’ve lost my ass 😭 At least I only have one chin now though – it suits my hair much better!”

That works for me, I would prefer we all laugh at my problems, cos if I’m not laughing, I’m crying.

But sometimes, laughing doesn’t feel possible.

Being chronically ill is honestly not a laughing matter, no matter how much I do laugh. Sometimes it’s truly horrible.

It’s lonely. It’s othering. It hurts. It takes things from you. It ruins relationships. It ruins friendships. It blurs how you perceive yourself.

And that can spiral into a truly dark place.

I think it’s safe to say that every time I’ve gotten very sick, I’ve gotten a level of depression.

Every time I get diagnosed with something new, I get mild depression. Everytime my treatment changes, the same. Add something to my health management routine, I’m back in that place.

It’s basically a given. A level of hating life. Not wanting to get out of bed. Wanting to be alone and avoiding people. Low energy. Sleeping badly. Getting snippy and irritable. Eating lunch by myself. Constantly thinking about how much my life sucks. How unfair it is.

I’m the type of person who likes to work out exactly how sh*t my life it. Like, I do maths to work out how much it sucks cos apparently that’s the sort of person I am.

For example, I’ve had this line of thought…

“If I have to spend 3 hours in the hospital every four weeks for my antibody replacement therapy, that’s 39 hours a year. That’s 1.6 days a year longer than my friends that I have to spend in hospital to ensure I’m healthier than I would be otherwise, but still not as healthy as them.

Then if you consider the fact I need to travel to and from the hospital and spend a day at home feeling horrible, that actually works out to 36 hours each time. That’s 20 days a year spent getting and recovering from my infusion. That’s nearly 3 weeks, or 6% of my life.

I was diagnosed when I was 27. Say I live to 85 years old, that’ll be 27,000 hours dealing with infusions – that’s over 3 years of my life spent feeling horrible so I can be healthy enough to live to age 85.

That’s not even including the time I spend manually clearing my lungs, doing sinus rinses, going to doctors appointments, taking medicine, spending money, getting sick and rebuilding myself, educating myself, advocating for myself, crying on the couch.”

Then my head explodes. I’m spiralling down.

Sometimes I do the math and I say to myself, “I hate my life”. I wonder, “What’s the point if I’m spending all my time fighting”.

I look at my friends and I think,“I wish I was you. Is it worth it if I’m never going to get the life others get?”

I look down over my balcony and I think “It’d be so easy. It could be so quick”.

I think of the most effective ways I could do it. Just simply end the pain. I would no longer be a burden.

I step back from my balcony and think about everyone who loves me and I think, “No, I would never do that to them”.

I remember the amazing times I’ve had and I decide, “No, the good outweighs the bad… I think…”. Then I listen to a podcast, or watch TV, or work out, or talk to a friend, or go to work, or write a blog. I drown out the voice trying to tell me that my conclusion was wrong.

But no matter how hard I try shut up the voice, it’s sitting in my subconscious until the depressive blanket lifts off of me.

When I’m myself again, I have no concept of how those thoughts could have even touched my consciousness. I’m too positive and optimistic for those sorts of thoughts!

But when it’s their, it sits with me. It’s there with me when my friends are eating food I can’t eat because of my bowel disease and my thoughts start spiralling.

“I hate this. I hate this. I hate this. F*ck this. F*ck this. I’m going to cry. I need to leave. I hate my life. I hate it. It’s pointless. Why do I bother?”

And then my friends, unknowing, will make me laugh. My laugher pushes the voice down. It’s still there, but I won’t let it drown me.

Before I got diagnosed with my Primay Immune Deficiency it was even worse. Living with an unknown thing ruining your life is near unbearable.

Knowing what’s ruining your life makes it easier for you to get your head around it – better the devil you know than the devil you don’t, as they say.

I remember not understanding why I was so sick all the time – from my teenage years till then. Why it was getting worse and worse. Why I was a young “healthy” person getting unusual and serious problems. Why no doctors were seriously listening to my concerns.

I assumed it was my fault. Literally.

I came to the conclusion that the only answer for this sort of thing was that I was being punished. I decided that I must have done something in my life so bad that karma was coming down on me.

I wracked my brain to try understand what I had done to deserve this. I couldn’t think of anything that I had done that was so horrible that I deserved so much illness.

I decided I must have done something as a kid and repressed it. Or maybe it was something I had done in a past life.

I didn’t believe in karma or reincarnation, but as far as I was concerned, I had clearly done something to deserve this punishment and this was the only thing that made sense.

I started looking up hypnotists to see if I could find someone who could pull the memories from the crevasses of my brain so I could learn what I had done so I could try make up for it and hopefully lessen the punishment.

Seriously.

Looking back, I must have been seriously depressed. I felt completely isolated by my “friends” who weren’t interested in hanging out with me if I wasn’t partying.

I was struggling without a diagnosis. I was struggling with being super sick. Some of the people who were physically closest to me were the most unsupportive and I was forgetting my worth.

Can you imagine what this sort of sadness, fear, pain and self-blame does to a person? It was horrific.

I remember one day having chronic sinusitis and shingles, maybe pneumonia? Who knows – point is, I was extremely unwell. I was driving 3 1/2 hours to my parents’ house by myself to catch up with them.

I quickly spiralled into the depressive hole as I drove. I wasn’t even off the Southern motorway when I was so deep in negative thoughts.

Out of no where I started picturing myself speeding up and up and up and driving my car into the the corner of a big brick building.

“It’d be so easy” I thought.

I started crying as I drove.

It felt like I was using all of my energy to not just do it. To not just end the pain.

To not just end the pain that I had decided was my fault. That I deserved for being a horrible person and doing something, probably in a past life. To stop being a burden on everyone.

I was staring straight ahead and trying not to picture all the ways I could end it.

I still had 3 1/4 hours of driving to go.

I pulled over at a service station and bought some McDonalds, some chocolate, an energy drink and some water – everything that I though would give me happy chemicals. Then I put on a playlist of the most cheesy, upbeat singalong music I could find and I blasted my stereo at full noise (literally) and I sung along with it for the next 3 hours as I drove.

I was NOT going to let that voice tell me to do something that I knew I didn’t want to do. I was exhausted by the time I got home and I was so relieved to see my parents and I couldn’t tell them what was happening in my mind.

I knew they wouldn’t let me drive back to Auckland alone and I didn’t want either of them to drive 7 hours because they were afraid I might kill myself.

I knew I wouldn’t do it. I figured I’d just sing all the way back and I’d be ok.

This feels like a hell of a weight-off-my-shoulders way to say, chronic illness is a bloody rough journey.

Your friend, family member, acquaintance might be smiling and even laughing at their health issues, but deep down there could be something much darker going on that you could be shocked to know about.

I’ve read a post shared around before that says “Check on your strong friend”, and I’ve never related more to a post.

People often call me strong, but who on earth would have the guts to ask me, “Do you have thoughts of suicide?”. I don’t know.

I’m not sure I would have the courage to ask that either. Maybe that’s something I need to work on.

If anyone asked me that – like I said, I’m an open book. The answer is, “Yes”.

I’m strong, I’m resilient, I will fight and fight my illnesses, but yes, I have thought about suicide. Quite seriously. Many times.

My life is hard and I’m strong. But when you’re looking at all of your options for how to deal with your issues, that escape always feels like one of them.

I do make a conscious effort to keep my feelings positive.

I tend to use exercise as a way to kick bad feelings like this out. A boxing class is the best way cos its literal. But being sick means that’s not always an option.

I try talk about my feelings a lot (sorry to those who end up on the receiving end of that). Generally not about suicidal thoughts, but about the feelings that are laddering up to those thoughts, just so I can get it off my chest, and usually get validation or helpful feedback from them.

I’ll try hang out with my friends where I can – go to pub quiz, get a coffee, go for a walk around the park. Or chill by myself and binge a good comedy Netflix show (I don’t watch anything that is not upbeat and funny by myself – I don’t trust my mind). Or just listen to a nice podcast.

All these things help me get out of the spiral and see the bigger picture and they help me get through.

It’s important to look out for your sick friends. Look out for your strong friends. Look out for yourself.

The statistics in this country says it all. Suicide a serious issue and we need to make people feel comfortable talking about it.

Talk to your friends if you’re worried about them. If you’re worried about yourself, talk to a trusted person. A parent, a friend, or a counsellor or help line (see the list below).

I’ve been seeing a counsellor every week for over 2 years for a few different issues I have and I’ve spoken to her about these feelings when they get stronger.

It makes a huge difference to talk to someone safe and get it off your chest, otherwise it’s another weight you’re carrying and hiding constantly which doesn’t help.

If you’re feeling bad but not critical, try going for a run or meditation. Maybe go to your favourite coffee shop, check out a gallery, or sing along to some Alicia Keyes (works for me ) until the feelings go.

Always remember, you are loved. You are strong. You can do it. We can fight this fight and we can win it if we work together.

Love,
Charlie xxx


There are lots of people who want to talk to you if reading this brought up any tough feelings for you. Please look after yourself and those close to you.

Below are places you can get help in NZ:

Things to listen and look out for if you are concerned about someone else

Verbal

  • “You won’t have to worry about me for much longer”
  • “If I don’t see you again, thanks for everything”
  • “I can’t live without her, there’s nothing to live for”
  • “You’re better off without me, I’ll fix things”
  • Open talk of death or suicide indicates a strong possibility of suicide, even more so if there’s evidence of a plan.

Any threat of suicide must be taken seriously

Behaviour

  • Previous suicide attempts (may be self-harming behaviours)
  • Talks about, writes about, hints or threatens suicide
  • Giving away or packing up belongings, making a will or other ‘final’ arrangements
  • Gathering together lethal objects
  • Under the influence of drugs or alcohol and /or a history of drug / alcohol use
  • Current or prior mental illness
  • Deteriorating relationships with others and / or excessive dependency on a key person
  • Isolating, being distance or remote, staying on their own for long periods, foetal position, vacant staring
  • Changes in sleep patterns – insomnia or hypersomnia
  • Changes in appetite – gain / loss in weight
  • Impaired school work, truancy, running away
  • Loss of interest in appearance and personal hygiene

If you are concerned about someone, Lifeline has some great tips about what you should do to help them.

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6 thoughts on “Getting honest about suicidality in chronic illness”

  1. Darling Charlie,
    Thanks for such good advice.
    Will share it and take heed.
    Have a great, crisp blue day. Xx
    Suse.

    1. Thank you Susie! Good to hear from you and I’m glad you think that 🙂
      There has definitely been some nice sun to appreciate lately! Need to make the most of it
      Charlie xx

  2. Charlies, thank you so much for writing this. It resonates SO much with me. Our loss, whuch is real and unending, is so often ignored. Losing our health is Something we can never get better from brcause PAD keeps us on an eternal roller coaster. I have suffered suicidal thoughts more times than I’d like to think about since I was diagnosed over 30 years ago. I’ve talked about it with friends and councellors, but never put it in writing. Xx

    1. Thank you for your comment Liz! It’s sad to think it resonates so much, but PID/PAD is a difficult reality and realistically, it can’t be that uncommon to have suicidal thoughts when trying to navigate it. Such a rollercoaster, like you say! I’m glad I have you guys to talk to xx

  3. Charlie, your words could’ve been written about me. Thanks for breaking the stigma. Just knowing my fellow sufferers are doing their best is one of the main reasons I’ve not acted on my darkest thoughts. It would feel like I had let down the side. Bless you 🙏❤️🐞

    1. Thanks for your comment Laura – I’m sorry to hear you suffer with this as well, but it’s kind of nice to know that we are all doing this together and we can relate and help each other up in our hardest times. Zebra strong! 😊💪❤️❤️❤️

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