Why are Some Emotions Harder to Experience after a Breast Cancer Diagnosis

 

'The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on.'

 

 Why are some emotions harder to experience after a breast cancer diagnosis, and others easier? Does it have something to do with protecting us from emotional distress?

 

    As you might expect from a group of women who have all had a breast cancer diagnosis, some primary and some secondary, we all find intense emotion triggered by hearing about cancer, reading about cancer, talking about cancer, even adverts about cancer on tv. What surprises us, sometimes, is the unexpected rush of head-on emotion that we are confronted with, often when we are in situations which make it difficult to deal with. Some of us described having to withdraw from situations or conversations in order to take a few deep breaths to stabilise ourselves, to manage the threatening panic that wells up inside us. Our post-cancer brain is on high alert and wants us to run away from anything cancer related, flight being preferable to fight in social situations where we need to maintain our decorum.

 

The trauma that is caused by a breast cancer diagnosis weighs heavily on the brain. We want to make sense of what we’ve been through, we want to come to terms with it and its impact, but sometimes our need to process what’s happened is just too much for us to cope with in the moment. At these times, our brains will simply shut off the experience and we find ourselves numb and dissociated, distanced from our own suffering in order to allow our broken brain to deal with whatever is in front of us. Our fear is so intense that the brain builds a wall which is a barrier to our emotions. Sometimes we break through the wall, and as time goes on we may find emotions hit us like a train, causing upset that demands we plug the hole in the barrier and leave the emotions firmly shut away from view. As a result we may find ourselves living with conflict and contradictions in our own head, wanting to understand, accept and even make friends with our experience, yet being unable to face the fear which threatens to overwhelm us. Our feelings may become out of synch with our current experience, with sadness flowing over us when we are in beautiful surroundings or living with continuous low level anxiety.

 

Our members described a huge raft of different emotions which we struggle with, not least anger which sits alongside the cry of why me? Why can’t I move on? Guilt at surviving, guilt at the pain our cancer causes others. We are angry that we didn’t get the support we expected and needed during treatment, that we are not getting the support we need now. We are angry that our bodies let us down.

 

Self-awareness is strong for our members, many of us having worked with counsellors and psychotherapists in order to process our experience of breast cancer. However, self-awareness may not be enough as our brains will act to protect us without us knowing and this can cause confusion and can lead to depression. A downward spiral of feelings we can’t own or process that overtakes any rationality, with fear dominating our waking thoughts. Our fear may lead us to disengage from anything that forces us to feel strong emotion and we find ourselves living at arm’s length from our feelings and distancing ourselves from life rather than immersing ourselves. Some of us reported evaluating our emotional experience rather than allowing the emotion just to be there. Living in black and white rather than in colour.

 

There is an external pressure to put on a brave face, to be positive, all the time. However many of us don’t feel positive about our cancer, although we can be positive about the day to day of our lives. The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on. On the outside, we are smiling, positive, in control. On the inside, we may be isolated, lonely, terrified, sad.

 

We may be at our most vulnerable at the end of treatment for primary breast cancer. The chemotherapy, surgery, radiotherapy is finished. We are sent away, possibly with a packet of pills depending on what type of cancer we have, to get on with it. The structure provided by appointments is gone. Now we have time to think, time to process what we’ve just been through. Our emotions are heightened, just as everyone around us is congratulating us for being brave, lucky, strong (and all the other platitudes) and aren’t we glad we can get back to normal life now? It’s very common for depression to hit us like a stone and we may feel totally bewildered. We may find it hard to sit and think about our cancer, as thinking about it makes it real, and while we were on the treatment rollercoaster we didn’t have to acknowledge it was happening to us, we were just doing as we were told, not feeling very much at all, we were too busy.

    Many members commented on how useful it is to have the safe space that is our private group where we can tell it like it is with no fear of upsetting anyone. We all want to protect our loved ones from how we really feel, we don’t want them to be feeling our fear. In time, many of us are coming to terms with what has happened to our bodies and the mental scars left behind. As one member put it: we move on to find joy in the simpler things despite being quick to anger. The depth of our emotion means we can move from elation to sadness in a heartbeat, holding both together with our fragility.

 

We may be broken, but we are here.

What Does It Feel Like Being Diagnosed with Metastatic (Secondary) Breast Cancer

 

 

Alone. Devastated. Isolated. Shocked. Abandoned. Unsupported.

These were just a few of the words used by women living with secondary breast cancer to describe their feelings about secondary breast cancer.

 

Some women had been recently diagnosed with secondary breast cancer after learning to come to terms with their diagnosis of primary breast cancer, others had been diagnosed with secondary breast cancer some years ago, and a smaller number had received the news that they had secondary breast cancer when they first presented i.e they did not move from being treated for primary breast cancer and then go on to develop secondary breast cancer, and instead had to deal with this shock immediately.

 

We heard that living with secondary breast cancer feels like charting unknown territories as women try to live the best life they can, and live it to the full, all the while knowing that it is not going to be as long as they hoped, that maybe they won’t get to see their young children, or their grandchildren grow up.

We heard how incredibly lonely and heartbreaking it feels not to be offered the same amount of support and attention received during treatment for primary breast cancer.

 

We heard how marginalised women feel when there is so much emphasis given to “moving forwards” after active treatment. There was a plea to remember that women with secondary breast cancer only finish treatment when it stops working and no options are left for them.

 

We heard that women with secondary breast cancer are afraid of scaring or upsetting women who are currently in the position of being “NED”. We heard that they feel guilty for their feelings when they hear about others moving on with their lives when they cannot.

 

We heard how it feels to try to live with uncertainty about the pace of progression. We heard that women do not want to be defined by their disease; they do not want to be seen as “terminal”. They want to be valued for who they are, to be loved and supported by their family and friends. They do not want people to pretend or avoid their situation, they need their position to be held and validated but they also need support to continue to participate in every day life, to be “normal.” Women strive to live the best in every moment, even if that moment was not what they had wished for.

 

Some women manage to continue working, others have had to reluctantly relinquish careers. Women relayed an experience of long periods of stability in their health, sometimes punctuated by periods where they are very poorly, perhaps with fatigue, perhaps following surgery or having had cyber knife treatment, for instance. Whatever stage women are at, they continue to contribute to their children, families and communities.

We heard that women find it hard to cope with the limited understanding they encounter about secondary breast cancer. This widespread ignorance is isolating and they have to make difficult choices about what to share and how to present themselves.

 

We heard women share that when they were first diagnosed they thought they would never be happy again and of their surprise that it is possible to experience joy alongside sorrow. We heard of the challenge of balancing profound sadness alongside the paradox of sometimes forgetting one is ill at all. One woman told us about her idea of living for three years and how she thought “three years, that’s not so bad, it’s a thousand days - I can do a thousand nice things”. So, she does nice things whenever she can.

 

Naz told us that there is little research into the quality of psychological well-being in secondary breast cancer, but what there was highlighted three main points:

 

i) the quality of care is low or non-existent (but improving) for women with secondary breast cancer,

ii) that psychological vulnerability is much higher, but,

iii) cancer related expressiveness (ie sharing emotions) can help ease some emotional burden.

 

In short, the psychological cost weighs heavy, and there is disappointment at the level of care invested in secondary breast cancer.

 

A few women reported coping better when they’ve received ‘good quality’ care from a breast cancer nurse or their oncologist.

 

How can we help a friend or someone we know who has been diagnosed with secondary breast cancer?

 

Those of us with a diagnosis of primary breast cancer draw on our experience to be supportive, to listen and hold hands, we try and put aside our survivor’s guilt, enjoy our friendship, do fun things, but be there for hospital appointments and the worry. A few of us shared having spent special times with our friends whose health was failing. Our love is unconditional.

 

At BRiC we do not draw a line between primary and secondary and instead see both on a continuum. We understand that having a safe and non-judgemental place where we can share our deepest fears can help - a place to talk, to cry and to nourish.

 

We are all ears and eyes. We are listening.

Cancer and Loneliness

 

“Cancer is a lonely place to be”

 

We've talked about our experiences of loneliness. Naz told us that loneliness can be a long-lasting effect of a cancer diagnosis and can increase the chance of developing depression. So why do we feel so lonely, even among our family and friends?

 

We have found that whilst some of us have experienced loneliness lifelong, for many of us the experience of feeling lonely after diagnosis of breast cancer is new. We find that loneliness continues even years after developing cancer. We find that there is a lack of connection between ourselves and our friends and family, even in the most supportive of our relationship groups. Having a serious illness such as cancer changes our perspective on life with a real sense of fragility and a loss of our own sense of self in a way that cannot be fully understood by others who are not directly affected. We have all lost friends who did not - or could not - support us, which was hurtful. This adds to the feelings of being alone. We feel apart from those around us.

 

Many of us describe that we prefer to spend time in our own company and that this makes us feel “lonely - but safe”. We don’t feel the need to put a smile on when we feel so alone, even in company.

 

For some, the physical reality of breast cancer exacerbates the feelings of loneliness. Some have retired from jobs we enjoyed and miss that purpose and connection with our colleagues. Symptoms such as fatigue mean some of us cannot participate in activities we used to love and this makes us sad - missing out spending time with others makes us lonely.

 

Almost all of us find that being in the company of others who have been diagnosed with cancer allows us to talk honestly about our feelings. There is a sense of connection and common experience in spending time together - either in a local support group or in a virtual group. Nearly all of us agree that our mutual support eased loneliness and many of us have found firm friends in this way - people who “just get it”.

 

   In BRiC,  we realise we are no longer alone - we hold hands together.

 

The Lonely Poem

 A silent holding of hands

A listening ear

Is that too much to ask for?

They don’t want us to talk about our cancer

Our friends fall away

They block us out

Put distance between us

So much time alone at home,  recovering from our treatment, not just alone, but lonely

We see our scars every day

But we can’t talk about it.

Others don’t get it, they don’t get us

They change the subject

‘But you’re ok now, aren’t you?’ they say

We’ve given up trying to explain

Our emotions belittled because they feel uncomfortable

We hide our feelings to protect our loved ones

We didn’t know it was possible to feel so alone and yet be surrounded by love and people

We feel like ghosts

Not able to be our real selves

We hold back, hold it in, hold on

Deny who we are 

Our cancer is part of us now

We don’t really know who we are anymore

It’s the whole effort of figuring it out, not burdening people with it,

Yet lacking that connection because we can’t explain it

Sometimes we self-impose isolation because we don’t feel 

Important enough to take up other people’s time

And we find it hard to accept support

A lonely place to be, especially at night when the pain is bad

And our minds are working overtime

Are we responsible for our own loneliness?

We’re not OK

We want to be allowed to not be OK

We want to be acknowledged

But they are bored of our journey, living with the legacy

And no-one understands this inbuilt fear

The loneliness of our thoughts

So busy fearing the future that we aren’t living in the present

We’ve learned it’s ours to carry alone,

We withdraw into our little lonely bubble 

Our loneliness a constant companion

Alongside isolation, fatigue, boredom, silence, regret

Where is our joy?

Where is our excitement?

We carry this huge secret,

We want to shout out, ‘if only they know what’s going on inside me!’

We are scared, we are alone, we are lonely in this new world

We walk alone.

Yet there are a few of us, who have limited time left

Who have never felt less alone.  We are blessed to have devoted family 

And our happiness may seem inappropriate

Are we in denial? Or just acknowledging our real feelings, 

Rather than the emotions the situation would seem to demand?

Does it even matter?

For others this is a terrible time,

Thinking about death, we try to be part of the crowd, the living,

But we are sad and lonely there. 

We cling to each other, our cancer friends,

The ones who’ve been there, the ones who understand

Sharing our loneliness through our honesty

And when we reach out to those who understand, we build a bridge

And for a time we can feel less alone

As Joseph Conrad said, ‘We live as we dream, alone.’ 

Alone at night, afraid of the future,

But with hope 

We’re finding our way now

And other special people become our friends

In our parallel world

Our virtual safe space

To be whoever we want to be, and know we are not quite so alone

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. 

 

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 or very little related to 'guilt' in breast cancer.

    

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.

Post-Traumatic Growth: Growing from Trauma

 

“We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being.”

Post traumatic growth is a concept which refers to the possibility of 'growing' and learning from the trauma that we have endured as a result of (any) cancer diagnosis - we re-evaluate our priorities, our values, and find a deeper gratitude and appreciation for life.
    
    We thought about the way that our experience of primary or secondary breast cancer had changed us. Many of us felt our lives had changed positively, for example, we have a greater appreciation for who we are and ‘our lives' feel 'better', 'richer' and more meaningful. Overall, we have discovered a new and deeper appreciation for many of life’s simple pleasures, things we had taken for granted before our diagnosis, maybe being in nature, or, in the company of our families or good friends.

    Some of us feel we were kinder, more self-compassionate, wiser and empathetic. We stop “sweating the small stuff.” We become more assertive, more confident and less apologetic. We shared examples of speaking up, setting boundaries in a stressful work environment, changing and leaving toxic jobs, or toxic relationships. Some of us have developed new interests and skills; maybe we have found ourselves wanting to learn and study or we had found ways to express our creativity, perhaps taking up new interests. Friendship and the chance to make new friends was particularly valued as an opportunity for pleasure and growth.

    Many of us share that we have reconnected with our values, perhaps finding a greater appreciation for 'normal life', home and family, whilst others had experienced a shift in values, perhaps becoming more adventurous or willing to take risks. We open ourselves up to new experiences, doing new things, including things we have never before had the courage to do.
    
    Resilience, Naz tells us, is a concept that is derived from growth post trauma. We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being. A being that is not like the ‘old’ person we were, but where we find an acceptance of the changes, the losses that we endure as a consequence of our trauma. Naz told us that she finds it helpful to see vulnerability as an opportunity, a platform to fly from and to explore what we can make of the changes, the restrictions and the fears, to find what we can reclaim.
    
    Not surprisingly some of us feel more cautious about attributing gains to our experience of cancer - particularly, but not only if our losses are still raw and painful. We reject the idea that cancer is a gift or a teacher. We all know that there is nothing positive about any cancer diagnosis and its impact on us is profound, and for many of us, long lasting. It takes courage to face out trauma, and we need to do this in our own time. Here at BRiC, we do not turn away from the harsh realities of our experience and our treatment. We know all too well that we are tired, fatigued, and our cognitive functions are running low. We also recognise the ongoing challenges women with secondary breast cancer face. Could we, some of us wondered, be at risk of placing unrealistic expectations on ourselves to 'grow' and learn from trauma in light of these challenges?
    
    As we have said before, there is a crucial difference between recognising that we can come through the crisis of cancer, resilient and strong, and, coming to the view that we are resilient and strong because we had cancer. It is what Naz termed, the ‘clever me’ which is inside each of us and can turn the experience around to our advantage. Even though we have less control as a result of our breast cancer, we can use that vulnerability as a stepping stone to take back control where we can. It is even possible that post traumatic growth might help us, it might make our journey through trauma easier.

    Our discussions highlight the importance of avoiding a prescription or a blanket definition that applies to everyone, and we should instead strive towards our own path. Post-traumatic growth does not mean that we will be entirely free from the painful memories of what has happened to us. Our experiences and grief and the challenges we face are part of who we are, not something to be pushed away. But, we can talk to ourselves kindly, and we can learn to accept and understand the significance of our experiences and feelings in ways that validate our responses so that we live our lives more meaningfully. We can learn to see ourselves, and I mean, really see ourselves, in all our flawed and imperfect beauty.

    We are all learning to acknowledge the importance of self-care, an integral component of which is the importance of listening to our bodies. This includes looking at the people with whom we are surrounded and taking active steps to ensure there is mental and emotional distance between ourselves, and any toxic behaviour from others.

    Being a member of BRiC provides a wealth of support. This includes help to give consideration to and gain an understanding and awareness of, the psychological impact that a breast cancer diagnosis has upon us. Learning to ‘understand and piece together the fragile pieces that make me up’, summarises so well the help we need to embrace ourselves unconditionally and with self-compassion. Our pieces may well have been put back differently but within that, there is room for growth.

Don't Sweat The Small Stuff: The Other Side of Cancer

 

For many, it’s about living life to the full, appreciating all the good things and being grateful for all that we have. Living one day at a time, in the moment. Realising that life is something we want, no matter what. For others, despite anxiety, worry and overwhelm being features in our lives, there’s a renewed desire to live our best life, a clarity of vision like having a new pair of glasses. What we want - and perhaps equally importantly, what we don’t want - becomes clear and our goals crystalise before us.

 

Many of us struggle to say No but we’re learning, and once the word is said (the hardest part) everything falls into place, and this gives us confidence to be more discerning in what we sign up to. Some of us also want to say Yes more often. We aren’t used to asking for help, for going for what we want, again we’re learning. Making a fuss is ok, we matter. We are important, and we are enough. We can look after ourselves, put ourselves first, treat ourselves with compassion and love. We can be assertive whilst retaining our empathy and we recognise that we can actually look after others better when our own needs are met first.

 

Simplicity features for many members, in finding pleasure in small everyday things, feeling the love of family and friends, finding beauty in nature.

 

Many of us are finding ways to turn negatives into positives. We might be used to being the organiser, the one who pulls friends together for outings, and this might feel one-sided. However one member’s friend said to her ‘you are the light for those people who struggle to engage’ and so she can now see her role changed as a positive one. Other examples include being thankful for our lives rather than worrying about getting older, and appreciating our bodies, scarred though they may be, for what they do for us rather than for what we look like. We no longer take our bodies for granted, and we understand that our bodies and minds must be nurtured in order to flourish.

 

A phrase used by many of us is ‘don’t sweat the small stuff’. We find it easier to let go of trivia, to work out what matters. Many of us are more outspoken, prepared to stand up for what we believe in. We will not perform for others or be led like a sheep. However some of us find we are more sensitive than before cancer, although generally we worry less about the opinions of others. Many of us find we slip into old ways very easily, and when we are aware of this we may pull ourselves back but we don’t beat ourselves up about it.

 

There is a sense that we have slowed down, taking more notice of the world and people around us, but at the same time considered carefully what we want to do with our lives and sought out opportunities to make those things happen. We live more consciously rather than just letting life happen to us.

 

Of course we all have down days, when we feel low or unwell. We are wise enough to know that these will pass, and that in order to know our joy we must also experience our sadness. We are not glad we had cancer, but some of us believe it has made us a better person. New friendships are a key positive for many of us, and having the courage to move away from toxic relationships.

 

One member described herself as having become very ‘feelingy.’ Feelings may become more intense, our sensitivity to what is going on around and inside us heightened. Alongside this comes perspective and peace of mind. We have a desire to feel the full range of emotions and to build a happy and fulfilling life. Some of us have a disassociation with ourselves, feeling as though we are watching ourselves going through life, particularly our cancer treatment. We may want to change but perhaps we haven’t yet had time for what we’ve been through to sink in. Our members are at different stages of their cancer, some recently diagnosed and in active treatment, some many years beyond primary, some living with secondary cancer.

 

We recognise that our time on earth is short, and that it’s up to us to enjoy what we are given. We know that worry is fruitless and that we won’t look back on our lives wishing we’d worried more. We know that sharing our experiences helps us all.

 

Avoidance: Repression and Suppression

To repress means moving something painful away from conscious experience. In fact, the brain does this automatically when the emotional pain is too much to handle. Avoidance, distraction, replacement, dissociation, all involve repression. When practiced, it becomes a habit and we do it almost spontaneously.

 

Naz told us about some work she had previously done to try and understand the brain and physiological mechanisms behind repressive coping, a coping style used by people who believe that they are not anxious, but physiologically, they still may show signs of anxiety, especially in stressful situations. When we use repressive coping we are using an avoidant coping style to deal with stressful and upsetting experiences.

 

Does Repressive Coping Help?

 

Research on the brain shows that people who repress, and downplay their emotions, process even greater levels of threat sometimes greater than those who report high anxiety. Avoidance also weighs heavy on brain networks. So, physiologically there are signs of distress.

 

Repressive coping is regarded a possible risk factor for physical disease as well as a consequence of chronic illness, and as such is very relevant in breast cancer. Repressive coping is linked with cancer, cardiovascular disease, crohn’s disease, hypertension and so forth. While most of the evidence is correlational, recent work is trying to establish a causal relationship, especially with chronic stress.

 

Our members discussed how they’d used repressive coping. Almost everyone agreed that they repressed and hid their true feelings and fears at time of diagnosis and through treatment. Many of us felt completely numb, due to the shock, in fact we didn’t know what we were feeling. Numbness is another form of repression. Through time however, the repressed feelings are rising to the surface. We can feel confused. We become aware of those feelings but we find it difficult to deal with them. There are mixed feelings. We feel mentally exhausted, fatigued, we are fearful of crying because ‘I may just cry forever’, ‘I just want to scream’. The pain is difficult to digest, and so it may express itself through ‘mini melt-downs’, ‘not coping with side effects efficiently’.

 

The brain can learn how to let go, and help us regulate our emotions. Repression brings rigidity, and hinders brain plasticity. Talking helps, writing helps, exercise helps. Breathing helps. Crying is a good release. Reaching out for help, helps! Facing our fears and embracing them can work. Many of us reported that counselling has helped, but the process of healing for some of us can be longer. What we agreed on is the awareness of those feelings, and that is a major first step.

                                      

So, the question of whether repressive coping works or not has an easy answer. Sometimes repression can work in the short term, but the longer term effects on our physiology take a toll.