“One of the most important things is to feel like someone else has actually been through this and has lived to tell about it. It’s incredibly empowering to realise that not only are you not an alien, you will survive”.Anne Pinkerton (SELF published August 2, 2019).
We’re told that grief is a chaotic yet natural response to a loss that can take many different and difficult forms. Putting a search into google, asking how many types of grief there are, reveals a whole host of grief responses with some stating five, others 8, some say 10 or even 16 or more! Have you ever read a list of possible side effects when taking a new medication and feel that you have every symptom? Well that’s how I feel about the types of grief as I can find something, in just about all of them, that I can relate to at one time or other.
Sixteen years ago though, I didn’t know about the various different types of grief; perhaps they didn’t all exist back then. If I had known back then, that no matter what I was feeling, there were others who had felt it, or were feeling it or could feel it in the future, I could have been reassured; I would have felt that my grief responses were to be ‘expected.’ I wish I had known what to anticipate and possibly expect back then, instead, I felt that I was going mad. Many will say that you can never fully prepare for how grief will take you, but in some ways, with ongoing research, awareness and dialogue, I think you can … a bit. If you know what you might possibly feel, then it’s not going to come as such a shock. Recently, The Diagnostic Statistical Manual of Mental Disorders volume 5 (DSM-5), published in 2013, by the American Psychiatric Association, decided to include empirical findings about grief. It states that, “An expectable or culturally approved response to a common stressor or loss, such as the death of a loved one, is not a mental disorder”. That’s good isn’t it? Like I said, grief is a natural response and I don’t think that I would have wanted to be labelled as having a mental disorder to boot – that terminology is just awful.
But let’s not lose sight that sometimes, if grief isn’t processed in a healthy way, it has the potential to escalate and grow into something that can be life depleting and far worse than expected. So, having all these grief responses labelled as types means that those left bereft can ask themselves whether what they’re feeling is to be expected or whether, particularly if you associate more with the unresolved, chronic and complicated grief types, your responses are becoming more dark and less manageable. It means that you can give yourself permission to ask for help. The DSM-5 has recognised that for some, grief can precipitate a Major Depressive Disorder (I’m going to stick with Episode (MDE) such is the devastation it has the potential to cause. Prior to the DSM-5 somebody couldn’t be diagnosed with MDE if they had recently been bereaved, which seems a bit daft when you consider that you could get the diagnosis, care and treatment if you had lost your job, or were desperately missing your child because they had say, gone to University, but not if they had died! Grief was merely labelled under “other conditions” that might need clinical attention along with, for instance, occupational stress and educational difficulties. So finally, in my opinion, The DSM-5 has validated the enormity, the potential gravity, the magnitude, the utter depth of pain and the absolute seriousness of the stress it can cause. Although, not everyone agrees.
Some really don’t want grief to be seen as a disorder or even an illness and I understand that because it’s something that, in all honesty, we don’t necessarily want to be cured from, rather, we just want to be able to live with it in a softer, gentler healthier way. Plus, in seeing grief as a precursor to major depression, the worry was that the grieving would be given antidepressants willy-nilly and might therefore have the normal, all be it painfully difficult, adjustment process distorted, delayed or denied. There is though, agreement amongst scholars that a common, normal and expected grief response can resemble a mild depression, so in response, the DSM-5 lists the distinguishing features between grief (and mild depression) and the manifestation of a Major Depressive Episode so that clinicians are better advised and can help those suffering receive appropriate treatment and or medication.
I suppose only time will tell whether the inclusion of grief as a potential precipitator of MDE will prove useful. So far, there hasn’t been a reported rise in prescribed medication. But, we need to ask ourselves whether or not that is because people are suffering in isolation, scared of the stigma of being labelled with a mental disorder when, through no fault of their own, they have lost a loved one and are finding it overwhelmingly difficult to find their way through the yawning void of loss. If I’m honest, over the last sixteen years, I probably should have got more treatment than I have for my depressive episodes, but I didn’t because I didn’t want to appear weak and broken and I was scared of feeling ‘disordered’. However, if someone told me back then, that I had suffered a traumatic loss and could potentially experience prolonged, complicated suffering, then I may have been more inclined to ask for help. I would have been kinder on myself instead of seeing myself as flawed. It’s a bit like the fact that we call people who are addicted to alcohol ‘alcoholics’ seeing them as having a flawed response to alcohol rather than seeing the harm alcohol can do because it’s an addictive substance. The fact is, that grief can have a detrimental impact on life, cognition, emotion, health occupation and social functioning and we ought to stop downplaying it and pretending otherwise.
So, whilst I would not have necessarily wanted to be labelled as having a mental disorder, for me, having grief taken seriously enough for it to warrant inclusion in a diagnostic manual used by doctors is a positive step, as it means that instead of feeling weak and flawed, sufferers can be reassured that help is available. Perhaps there is remedy to be found in a diagnosis. Maybe consider that, for soldiers who have suffered mental ill health as a consequence of war, there is now a diagnostic condition – Post Traumatic Stress Disorder which doctors, and importantly society at large, recognise. Of course, it doesn’t mean that every soldier will come back from a combat zone with PTSD but it does mean that if they do, there is treatment, ongoing research, interest, help and understanding and society now looks at these individuals with compassion, warmth, sympathy and an appreciation of the atrocity they have been through. Similarly, it doesn’t mean that because we have suffered a traumatic loss we are going to suffer, mild depression, major depression, separation anxiety or PTSD – but it’s okay if we do. There’s help and understanding and you don’t have to suffer in silence. Information is powerful and at least now, dear reader, you have an awareness of the challenges you might face and what to watch out for. Sixteen years ago I didn’t.
After bereavement, the DSM-5 recommends a period of ‘watchful waiting’ before any diagnosis is made, but I had no idea about what to watch for and what symptoms to expect and in all honesty, just talking about grief in terms of a natural reaction to loss didn’t prepare me for the deleterious effect on my life, health and wellbeing. Prior to losing Faye, the only experience I had of death was the loss of my grandparents and that in no way, shape or form could have prepared me for the enormity of what I was about to face. So, I had no idea what to expect, let alone what was culturally accepted as normal responses to loss. My parents had suffered the death of a still born child, a girl they were going to call Louisa, but they never really spoke about it. Society was even more buttoned up then than it is now. I was given leaflets that spoke about the acute phase of grief and those around me who had lost parents and grandparents spoke about the first year as being the most difficult. So, it came as a huge shock that the second and fifth and fifteenth years floored me more than the first. The first year was a blur – a life lived on autopilot, in shock and disbelief. What followed was the stark, painful reality of loss, but I felt I couldn’t say anything because I’d only been told about the first year! It was all very confusing and I ruminated constantly about whether I was normal or not. In fact, the manual concludes that further research is needed and it has raised the question about whether a Prolonged Grief Disorder needs to be included in the next edition, with diagnostic criteria, according to Colin Murray Parkes (June 2020) including as a result of the death, at least 3 of the following symptoms being experienced to a clinically significant degree, nearly every day, for at least the last month:
1. Identity disruption (e.g., feeling as though part of oneself has died)
2. Marked sense of disbelief about the death
3. Avoidance of reminders that the person is dead
4. Intense emotional pain (e.g., anger, bitterness, sorrow) related to the death
5. Difficulty moving on with life (e.g., problems engaging with friends, pursuing interests, planning for the future)
6. Emotional numbness
7. Feeling that life is meaningless
8. Intense loneliness (i.e., feeling alone or detached from others)
9. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.
10. The duration of the bereavement reaction clearly exceeds expected social, cultural or religious norms for the individual’s culture and context.
11. The symptoms are not better explained by another mental disorder
But, just how long is too long? And when is it prolonged? Most parents will tell you that they expect to grieve for a lifetime, but does that mean we have a prolonged grief disorder? Now that I am aware of the diagnostic criteria, I can reflect and come to the realisation that I felt the vast majority of the listed symptoms, however, I did not, even in the early, more acute days, persistently feel their constant pervasiveness all day, every day. Even though it was like I had been shrouded in a dark veil, there were tiny pin pricks of light, moments of pleasure or happiness and glimmers of hope. I definitely had mild depression but I don’t think I would have met the criteria for major depression or a prolonged grief disorder.
Regardless, I didn’t get help and I would hate anyone else to feel as I did, and I would certainly hate anyone to fall through the cracks because their symptoms weren’t recognised. Everyone deserves help and if grief feels utterly overwhelming, that’s reason enough to reach out. I get help now and whilst writing this post, I am receiving person-centred counselling because, I still at times, sixteen years later, feel the most draining, life-sucking pain.
Unfortunately, there is no time limit to grief. Yes, there is a time line where you move towards some form of acceptance whereby your raw pain feels less excruciating but there isn’t necessarily an expiry date. The pain associated with grief is an expression of the love we felt for those no longer physically with us and if we loved them whole heartedly, as I did with Faye, then the pain and heart break is potentially going to stick around for years and years – there may never be an earthly end to it – I’d have loved her for a thousand years, so I’ll feel her loss for a thousand years too. But here’s where it can go wrong if we don’t discuss it. Sadly, I felt that because I had bouts of depression and still mourned Faye’s loss more than ten years after her death, I was defected. But I’m not. Yes, there are times when I feel more broken than others and yes there are times when I feel life is very bleak and really, really hard and there have been countless times when I have questioned whether life is meant to feel this way – monochrome instead of glorious technicolour. The worry is that bereaved parents can still feel reacted years and years after the loss but they are scared of saying anything because society expects them to have moved on. If society was more accepting, perhaps parents wouldn’t feel the need to connect in secret to online groups believing that no one else understands.
I’m sorry that this post paints a gloomy picture but that’s the truth of it. I feel there needs to be a frank, honest and open discussion so people know have an idea of what they might expect. Information is power and now you have a little more information, it’s up to you what you do with it. Watchful Waiting? Ask for help? Open up to someone? I’m guilty of keeping up a pretence and I don’t want to do that anymore. Too much positivity can deny what’s really going on and it can be toxic.
But it feels right that I should balance this by saying that I felt all of this and I’m still here having gone from merely surviving to a sort of thriving and if I can do it, so can you. A lot of grief work has to happen to work through some difficult feelings in order to reconstruct a life that still holds our loved ones dear, but it’s doable.
I have learnt to accommodate my grief. It will always be an integrated part of me and my life but it no longer takes over. It’s changed shape and whilst I can’t necessarily describe the shape, I can tell you that there are a lot less rough, sharp edges. Grief is more of a back seat driver and the painful feelings no longer take centre stage in the way they used to. Instead, grief has broadened my heart so that it can find room for the positive, precious memories of my daughter and not just the heartbreak. I have moved forward in life and have found ways to take her with me.
So, when parents say they’ll never get over the loss of their child, that’s the truth. We don’t ‘recover’ from grief although we can recover from the intense pain. Not recovering from grief doesn’t mean that you will only experience a life full of doom and despair. There are lots of us that are, right now who have not recovered from grief, but we have recovered from the profound distress of it. There are lots of us who are experiencing purposeful lives while also experiencing ongoing grief. And there are lots of us that need help a long the way. Lets not be afraid to ask for it. The opposite of depression is expression. So let’s keep an open mind and keep talking.