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.
