Guilt

Naz introduced guilt (and shame) as self-conscious, negative emotions that are directed at the self, which involve being critical, ashamed, and self-depreciating. Often, the anger is self-directed. In the context of trauma, guilt and shame have been extensively studied in relation to childhood abuse as well as more recently in the context of ‘survivor’s guilt’ post trauma, for example accidents, war, casualties, and cancer. A link below takes you to a paper that reviews research on guilt and shame quite nicely.

Naz found little research carried out on guilt in the context of cancer, but because guilt and shame are known to be risk markers for depression, they have been studied implicitly in depression. With the exception of a couple of studies, there is hardly any evidence related to 'guilt' in breast cancer – she found an interesting, which is not research based, and a link to that is also provided below.

Our common experience of feeling guilty manifested itself in myriad ways - from that first diagnosis when we ask why me? And - what did I do wrong? Our long list of guilty feelings poured out: why didn’t I find my cancer earlier? How awful we had found it to share the burden of our illness with our loved ones, causing them anguish and worry. Then for those of us who have come out the other side of treatment, there’s survivor’s guilt – why am I doing ok when another didn’t make it? Those of us with secondary breast cancer feel a sense of guilt about the impact of our illness on our children, including the painful knowledge that we might not be able to support and guide them into adulthood. Those of us with faulty genes shared our guilt about finding out, the worry that relatives may have the gene too and whether we’ve passed the fault on to our children.

Catholic guilt was mentioned and a deeply ingrained sense of responsibility for getting cancer. Then, of course there’s our work – we feel we let down our employers, our colleagues. We are continually apologising to everyone around us for having cancer. Our guilt spreads to the everyday stuff - that we don’t feel well enough to get everything done that we used to do, that we have to ask for help, that others have to care for our children, that we can’t exercise as much as we used to, that we can’t eat as well as we’d like to, because we don’t have the energy to cook, that we can’t engage fully with all the social events going on around us, that we have to pace ourselves, rest and relax (we are lazy, is how we unhelpfully see it.) The list goes on and on.......

But as our list grew, some of us began counteracting with questions, suggesting to one another that we had no need to take on so much guilt, and with this came the realisation that we are full of good advice for others, but reluctant - or find it difficult - to listen to ourselves.

And then came the voice of reason: ‘Why is guilt an acceptable emotion and others not?... I think that guilt is a harsh emotion to inflict on yourself just to make others feel better. Other people's emotions are their responsibility - don't make them yours.’ This point made a real impact on many of us, and brought us back to the negative futility of the guilt. Some of us shared that we don’t feel guilty, we know that getting cancer isn’t our fault, we didn’t do anything to deserve it, it’s just the hand we’ve been dealt with in life.

Naz questioned whether guilt serves a purpose, whether it can have a useful function in some cases? Our discussion came up with no easy answers, and our conclusions perhaps were more around how we can be resilient about our feelings in general – our anger, our sadness, our frustration, our sense of unfairness, our regret. We wondered whether embracing these emotions night allow us to be more truly be in touch with ourselves and to reframe our guilt. We often talk about self-compassion in our group, and this discussion highlighted once again how hard we can be on ourselves and that if we are kinder to ourselves, perhaps we can stop wasting so much of our precious energy on feeling guilty. Our discussion concluded with a powerful reminder that we are strong, powerful, vibrant, passionate women with rich and full lives.

This week our discussion explored our guilt and the sense of responsibility we feel for the worry and pain our loved ones experience as a result of our diagnosis with primary, or secondary, breast cancer.

Guilt can be one of the strongest emotions we experience - we feel guilty for bringing this disease into the lives of our families and its impact on our husbands, our partners, our parents, our colleagues, our employers. We feel guilty for exposing our families and friends to worry, fear and uncertainty. Those of us who are mothers are haunted by our sense of having allowed an unspeakable horror into our children’s lives; those of us who want to be mothers feel guilty that we may be unable to give our partners a family.

 

Some of us described feeling as though we had failed our loved ones in some way. Rationally, we know we are not to ‘blame’ but we can’t help but wonder what it was we did, or did not do, that might have caused us to develop breast cancer. We find ourselves questioning our life-style choices, our experiences and asking whether they could have contributed to our diagnoses. The questions that follow us are: why me? why not me? where did I go wrong? did I bring this on myself? Is this a punishment? We find ourselves taking on responsibility for developing primary breast cancer, for facing side-effects and complications, and if our cancer returns, for developing secondary breast cancer.

 

Naz explained that we are not as well-equipped to cope with guilt as other emotions. This is because guilt carries with it a strong emotional and cognitive component that justifies this emotion. Usually, our cognitive brain systems regulate or down play emotions that run high, but with guilt, our cognitive systems often serve to re-affirm our guilty feelings. This is one of the main reasons that feelings of guilt can last for a long time - for years post trauma.

 

Unwittingly, the expectations and reactions of others can re-affirm our guilty feelings. We are advised to - ‘stay strong’, ‘be positive’, ‘your family needs you’, ‘you need to keep going because of them.’ But often we don’t feel positive or strong and these 'sympathetic' comments increase our guilty feelings, we feel we shouldn’t complain, we are supposed to feel ‘lucky’ - because we have a ‘good cancer’, because we didn’t need chemotherapy, or radiotherapy, or haven’t had a mastectomy.

 

The media, we decided, plays a role in exaggerating these unrealistic expectations: are you strong enough? Brave enough? Tough enough? to ‘battle cancer.’ Women with secondary breast cancer described their emotional anguish as a result of the unspoken, offensive subtext that accompanies these messages - that they were somehow not strong enough or brave enough to stop their cancer coming back. The reality is that our power in influencing cancer outcomes and recurrence is very limited. So we feel doomed to failure. Yet we suffer in silence, unable to talk openly about the realities of secondary breast cancer.

 

Those of who have finished active treatment described how we want to meet the high expectations that we and others hold of ourselves. But we are exhausted, thrown into an ocean of uncertainty, trying to find a safe harbour to shelter from the storm of cancer which can be a long and turbulent. We want others to understand, to empathise, but we find ourselves mute and numb, unable to communicate how we feel and what we are going through. Some of us described feeling ‘survivors’ guilt’ when we have lost friends as a result of breast cancer.

 

So can guilt ever be made to disappear?

 

We can try to prioritise our own needs. We can share our vulnerability so that others see our interior experience as well as the tough image that we project outwardly. We can remind ourselves that we have very little control in the development of this disease. We can forgive ourselves.

Link to the review paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083636/

Link to the Huffpost article: http://www.huffingtonpost.co.uk/laura-price/coping-with-cancers-ugly-sister-guilt_b_2060752.html