The 5 Stages of Grief After a Mental Health Diagnosis
There are still days when I’m in denial
My life changed when I had a mental breakdown. In hindsight, I should’ve seen it coming, but at the time, it felt like it came out of nowhere.
It took six short weeks for me to land squarely into the care of the Auckland DHB crisis team. I had been bombarded by bizarre, frightening intrusive thoughts that I couldn’t explain and that I didn’t want. All I knew was that I wanted to keep everyone safe, so suicide felt like the most logical way out.
I was diagnosed in September 2020 with obsessive-compulsive disorder, specifically Pure-O. Life hasn’t been the same since. There isn’t a day where I don’t miss my old self. I’ve come to realise that my recovery experience has mimicked Elisabeth Kübler-Ross’s much referenced Five Stages of Grief framework from On Death and Dying (1969). While originally applied to death, it has since been expanded to any sort of personal loss. Like all frameworks, it is fallible — but for me, extremely relatable.
I feel like I lost a part of myself when I became unwell, and for a long time, I was in pursuit of finding that part of me again.
I grieve the ‘old me’ that wasn’t clinically ill— who didn’t have to think about medication, therapy sessions, and the consequences of every last decision on my mental health. Life felt a lot simpler back then.
Now knowing what OCD is, I grieve the cumulative time I’ve lost to the illness. Even pre-diagnosis, I had obsessive tendencies and engaged in compulsions throughout childhood and my early adult years.
Denial and Anger
Two years ago, I was a stereotypical millennial — I had gone to university, progressed my career, went travelling, and had moved cities. I’m ashamed to admit that I didn’t think that I could ever become mentally unwell. I’d supported others through mental health challenges, but for some reason, it didn’t click that I could be that person. Until I was.
To go from being a slightly anxious working professional one week; to needing to plead with my doctor to help with crippling insomnia and bewildering thoughts was nothing short of alarming.
The public mental health system in New Zealand is also an absolute nightmare to navigate when you’re in a bad headspace, adding to the rollercoaster of emotions. At the start, I didn’t even know the difference between psychiatry, psychology and psychotherapy, let alone half the clinical terms that were being thrown at me.
I met teams in strange clinical settings, in crusty old rooms at the back of hospitals and suburban clinics. There’s no how-to guide on how to handle a mental breakdown, and I muddled my way through it the best I could. Side note: anyone at the Ministry of Health working in service design, seriously, call me.
I was not the best version of myself when I was ill. I was not doing OK.
I was asked questions that made me doubt my sanity and was medicated up to my eyeballs to try and stabilise me. On more than one occasion, I asked when I could get my life back again.
“You are very, very sick. Think about it as though you’ve had a huge car crash and you’ve smashed your legs and body — you’re trying to ask me whether you can run again tomorrow. You will need months of work to even start walking again. Your brain is going to need time to heal.”
The psychiatrist left the room shortly after and I stared angrily out the window.
Bargaining
In the official Five Stages of Grief model, bargaining is the stage where one gets lost in the ‘if onlys’ and ‘what ifs.’ I did plenty of introspection — wondering whether we could have picked up signs of my mental distress any earlier.
What feels more appropriate for me though is a literal interpretation of this stage, as I engaged in actual, illogical bargaining with medical professionals.
I hated medication with a passion. I was ‘fit and healthy,’ after all. I naively thought I could overcome my struggles without medication, and of course, when I didn’t take medication as prescribed, my mental health deteriorated further. I tried to negotiate everything — the benzodiazepines, the sleeping pills, the antipsychotics, and the SSRIs. The dosage. The number of pills I had to take. When I took them.
I skipped medication, played around with dosages, and hoarded. I would not recommend this, but I was in complete denial of how sick I had become. All rationality had gone out the window at this stage.
That is until I ended up in a respite home because I became extremely unwell. The choice to bargain was taken away from me, for my own safety.
Depression
This one has persisted throughout my experience. I was clinically depressed for an extended period of time. Even as I started to get my life back together I would lose entire days to the cloud of sadness.
No one ever told me how lonely the recovery process was going to be. No one ever told me the hours I’d spend in my own head — reconciling the events leading up to crisis, the aftermath, and the ongoing recovery process.
I feel as though some days I’m watching my friends moving on with their lives sans mental illness, and it can sting. If our lives were movies, then it feels like I am the only one going in slow motion. The colloquialism ‘FOMO’, or ‘fear-of-missing-out’ couldn’t be more applicable here. Life FOMO when you’re sick creates another level of anxiety on top of the mental health challenges, adding to the feeling of helplessness.
Acceptance
Coming to the realisation that my brain misbehaved took me months of reconciling, and hours of therapy.
One of the most pivotal moments of acceptance happened during a therapy session. I was reflecting on how far I’d come, being able to leave my house and go on holiday with my friends. But I was infuriated because we’d hiked up some beautiful mountains, and I’d spent a fair bit of time while hiking internally wrestling with my intrusive thoughts, making sure I walked with a gap between myself and others just in case I might hurt them (thanks, Harm-OCD).
Then I’d spent the other half of the hike feeling guilty and hating myself. At the summit, I was trying to marvel at the view, but there was a part of me that was infuriated that I couldn’t get my brain sh*t together. I untangled this all at a therapy session the week after we returned. I still remember my psychologist’s words:
When you’re standing on the mountain top, angry at why OCD has just ruined half your hike, just remember that everyone else on that summit has their own sh*t to deal with. You’re wondering why you have OCD. The person next to you is dealing with a cheating spouse. The person behind you is having a career crisis. The next person over doesn’t have a good relationship with their kids. You’re not the only one not wondering why you can’t fully enjoy the view. We’ve all got our own sh*t to deal with. OCD is yours, but you will learn how to cope.
I never needed to hear those words more.
Today
It’s been a year and a half. Am I over it? Sort of, but not really.
While I’m in a much better place, OCD has added a layer of complexity to my life that I didn’t expect, but I’ve learned to deal with.
It’s important to note that Kübler-Ross herself admitted that these stages of grief aren’t linear. I’m at a point where these so-called ‘stages’ don’t feel like extended periods of torture anymore. At the moment, they feel more like transient phases. I still have moments of incredible sadness and anger, but they pass. I cherish the moments where OCD doesn’t rule.
I’ve slowly come around to the fact that it happened. My frustrations have mellowed out, and are generally directed towards how misunderstood OCD is, and how much more work needs to happen in the mental health awareness space. I speak openly and honestly about my struggles — in a weird way, this helps to reduce the power of my OCD.
Learning to live with OCD is now firmly part of my narrative. As I’ve stabilised, I’ve been able to rationally ‘bargain’ a plan that works for me — including sensible conversations with my doctor around adjusting medication as I’ve progressed. I’m now on a moderate dose of an SSRI, a far cry from where I once was.
I’m healthier than I’ve been in a long time and was somewhat surprised when my therapist said to me: I don’t think you’re clinically depressed anymore. You’re doing OK. For now, though, the OCD and anxiety live on.
I said at the start of this piece that I felt like I lost a part of myself when I became unwell, and for a long time, I was in pursuit of finding that part of me again. This was a pointless pursuit.
When I was diagnosed, I did lose a part of me. I lost my sense of self.
But since then, I’ve gained a stronger, more resilient side of me that I didn’t know existed. I’m kinder. I’m more empathetic. I’ve built a support network of people that help me through the tough days. I’ve grown. I’m learning to live with this. I’m learning that it’s absolutely OK to grieve, too.
I’m doing OK.
