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Survivor or Previvor Guilt: the side effect no-one warns you about

18 May 2020 by Pink Hope Team
Survivor or Previvor Guilt: the side effect no-one warns you about

Story from a previvor 

Last year, I lost a girlfriend. She passed away after a three-year battle with breast cancer. Her death was not a shock, but it came as a surprise, when only weeks before we’d been planning a visit to a new ice cream store to enjoy a treat together and a weekend art class.   

Her death represented a lot of things for me.  

The unfairness of losing a life, of a person so brilliant and so bright, the cruelty of breast cancer, & its ability to pick and choose those deserving of life who leave behind young children.  

The loss of my beautiful friend also ripped open for me a guilt I didn’t know I carried; previvors guilt, and the reality that unlike her, I had the chance and choice to change my future through the knowledge of my BRCA2 mutation, whilst she was left fighting, and eventually losing her life.  

Unlike my beautiful friend, I was able to remove my breasts before I faced a future of cancer. 

Whilst I have to consciously tell myself every day that there is no need to be guilty, that her death is in no way my fault, I use this thought process to also serve me in a new way; to remind myself each day to be grateful, for time with my beautiful children, and the chance to live a cancer-free existence.  

This is exactly what she expressed to me. Sitting on my couch after my mastectomy earlier last year, with her arms full of treats, she explained how brilliant it was I was able to change my future and that of my children through a simple genetic test.  

In speaking with the community at Pink Hope, I realise that my experience is not alone, nor is it uncommon for cancer survivors to also feel a sense of guilt for ‘beating’ the disease, when so many others don’t.

 

Story from a survivor 

My beautiful friend was diagnosed with metastatic cancer only weeks after I was diagnosed with breast cancer.  Our youngest sons were close friends and had been since they met in the early days of Primary School. When we were diagnosed, the boys were 14 years young. 

We went through chemo at the same time, we often texted each other on treatment days with a ‘chin up, you’ve got this’ message of support, we ribbed each other about our bald heads on the sidelines of the soccer field and while I gained chemo kilos, he shed weight to the point where he almost faded away. We both knew, without ever saying it aloud, that I would be OK and come out the other side of my cancer diagnosis, but he, would not.  

Throughout his courageous fight with cancer, he was faultlessly optimistic, positive and generous and he never once made me feel like I was the lucky one. But secretly I knew I was 

When he peacefully passed after a hard-fought two-year battle; my heart broke wide open in a way I hadn’t expected. There we many layers to my grief. I had lost a mate, a wonderful friend had lost her husband and best friend, three children had lost their Dad and the world had lost a good, good man. And I’d survived. 

I was blindsided by how heavily this guilt weighed on me and how long it lingered. 

In the days & weeks that followed I silently struggled to come to terms with my internal turmoil, conflicted by feeling grateful that my family hadn’t had to endure losing me and countering those thoughts with trying to make sense of why I survived and he didn’t.  

I found it hard to feel supported, when I did speak up about my feelings, well-meaning friends told me that guilt was a waste of my energy and I should just let it go. But I knew it wasn’t that simple, because I had tried very hard to move on.   

One day it became obvious that I couldn’t work my way through the grief and trauma myself and I scheduled a long overdue session with my cancer Psychologist. The relief I felt, being able to talk openly about my feelings and my guilt and to be able to cry without fear of judgement, was immediate.  For the first time in a very long time I felt heard, seen & supported. And I knew that I was going to be OK.  

The validation that survivor guilt is real, that it’s normal and that you’re not alone in feeling this way, was what finally enabled me to let go. To start moving on again, to be grateful for my ‘luck’ and to be at peace with my survivorship. 

 

Advice and insight from a survivor and psychologist 

We reached out to Dr Jodie FlemingClinical and Health Psychologist and breast cancer survivor for her personal insights and professional advice to help us understand the complexities of previvor and survivor guilt. 

Jodie, can you explain why ‘previvors’ tend to feel this sense of guilt around their preventative surgeries? 

In my opinion, we can safely say that this type of guilt falls under the umbrella of Survivorship Guilt.  It’s something that doesn’t receive the acknowledgement that it deserves and is usually misunderstood and easily dismissed.  

It’s been written that survivingor previving, cancer provides fertile grounds for feelings of guilt. 

A classic definition of Survivor Guilt is a deep guilt experienced by those who’ve survived an event that took the lives of many others and due to the many lives lost in the case of breast cancer, this experience of guilt is common and complex. 

I think empathy plays a great role here, amongst other emotions such as sadness, anger, grief, anxiety and perhaps even a pressure to give back in return for being one of the ‘lucky ones’. 

Some may feel unworthy to have survived, particularly when other family members may have lost their lives. Others may feel guilt at ‘not having done enough’ for those who have died. Guilt might be attached to having escaped traumatic, painful treatments, when others have not. It is also likely to be linked to potentially passing on genetic mutations to their children or their surgeries or situation having impacted on others. 

Guilt, whilst common, is certainly not a simplistic emotion.

Should you feel guilty if you’re a previvor and you don’t feel survivor’s guilt? 

Absolutely not. As I just mentioned, guilt is a complex emotion, and whilst it is commonly experienced, it is not a foregone conclusion that everyone will experience it, nor will they experience it in the same ways. 

There is no right or wrong way to cope with being a previvor, a cancer patient or a cancer survivor.  

The way we all feel and react and respond will likely be as unique as our fingerprints. 

Our perspectives and outlooks on life will all be shaped by our own individual life histories and experiences, and no two of us are exactly the same. 

“Should” is a really unhelpful thinking style, so if you catch yourself using that word in your self-talk, ask yourself whether you are really expecting too much of yourself in that moment – is your expectation realistic? 

What can someone do to overcome these emotions, or as is often suggested, ‘let go’ of these feelings of guilt? 

I would begin by changing the language we use around our expectations when it comes to our emotions or feelings of guilt. Rather than overcome them, let’s use manage them and rather than letting them go, let’s use accept them and sit with them. 

Because the truth is, that the only way to cope with distressing and uncomfortable emotions like guilt, is to honour them, feel them, and express them.

Part of the problem with survivor guilt is that it’s often minimised and we’re often encouraged to ‘get over it’, ‘don’t feel guilty’, ‘let go of it’, but the problem is that we are then not validating a valid human emotion in response to a significant life event. 

Instead, I’d recommend practicing self-compassion. Noticing your feelings of guilt and honouring those emotions by tending to them. Don’t ignore the need to share your thoughts, reflections, questions around that guilt. Drop the mask you may feel inclined to wear around others, particularly your family, and express your feelings. Be honest with them and with yourself. 

There may be many ways to express your guilt, perhaps through writing, art, therapy, music, helping others. But just make sure whatever you choose, it’s helpful to you and eases the burden of your guilt, rather than adding more pressure as might be the case if you choose to ‘give back’ to those less fortunate than you. 

As a woman who has had and overcome a cancer diagnosis, what advice do you personally have for previvors and survivors? 

I believe this is really a question of perspective, and no matter which position we find ourselves in, there will always be someone who is worse off than us, but also someone who is luckier, or better off than us. This is true for life. 

When I was going through treatment, I had a treatment buddy named Sam. Although we were diagnosed only months apart with a similar diagnosis and treatment regime, Sam’s cancer quickly metastasized.  

For three years I watched what felt like the Sliding Doors version of myself and I felt such extreme survivor guilt as I watched her husband and young family grieve her death. 

What took me a long time to realise was it really is the luck of the draw who gets cancer, who doesn’t. Who survives. Who doesn’t.  

Breast cancer, cancer in general, bonds people. It’s like you join this exclusive club where everyone is cheering equally for one another. Sam never once begrudged me my health, nor would I begrudge someone the opportunity to take every measure they can to reduce to risk of having to go through what I did. 

This is where the self-compassion comes in. You may have had the opportunity to escape a cancer diagnosis where others have not. But be gentle with yourself. You have also had to carry the burden of knowledge of having a mutated gene. You’ve also had to make difficult, heart breaking decisions for yourself and your family or your future family. You’ve had to grieve the loss of healthy tissue and changes to your body. 

This hasn’t been easy for you either. 

What final thoughts would you like to share? 

If you have been coping with worries or uncomfortable emotions that are impacting on your sleep, your relationships or your quality of life for longer than a couple of weeks, perhaps it’s time to talk to your doctor. They might just refer you for a chat with someone like me, which might be helpful. 

 

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