‘My cancer made me a better therapist – so why do we live in the shadows?’

I'm a counselling psychologist, in my seventh decade. I had bilateral breast cancer 20 years ago, but I still struggle with long term and late effects. When I was diagnosed – two separate diagnoses, several months apart – I was soon flabbergasted by the mismatch between what I was experiencing and what I had thought the experience would be like, both psychologically and physically. It went on and on and was enormously more traumatic than I could ever have imagined. 

I became aware that the women with a diagnosis of breast cancer I had counselled prior to having it myself, had received a rotten quality of service from me. I had thought I was doing a good job, but those women had just been tolerating me, in numbers of ways. I was determined to speak out about the mismatch I was now experiencing, as soon as I was able. 

Yet since that time, I have been persistently frustrated by the tendency to marginalise and pathologise colleagues living either with or beyond cancer. If there were more of a willingness to view the psychological impact of cancer through correctly prescribed lenses, our profession could learn so much. Both research and clinical practice could be changed for the better. 

A bottomless pit of assumptions

I had made such huge assumptions about what the experience of cancer was like for these women and how they would feel. I remember thinking at points, 'oh that's an overreaction', or, 'maybe they feel like this because such and such a thing had happened in their lives', rather than thinking that these women's emotional reactions were a normal psychological reaction to their diagnoses, surgeries, treatments etc. I thought that they should be over things that I now know they couldn't possibly have been over, given the nature of the whole experience. 

Looking back, had I been able to talk to or read something by a colleague with a dual perspective, it would have been such an eye opener. I was willing to learn, but perhaps my trained, medical model approach got in the way at first, to some extent. So many of us were trained in approaches that encourage a medicalised and potentially pathologising approach to the 'client' (who many of us still call the 'patient'). It's a 'them and us' culture. This model does not really allow for much leeway when we have to face the very same traumas those we are supporting are facing. We're under pressure to be almost 'superhuman'. Yet one in two of us will experience cancer in our lifetimes and most of us know someone living with or beyond cancer. It's not a 'them and us' situation anymore. 

We still have such rigid, unrealistic expectations of ourselves. We might feel we should keep the cancer and our work separate – almost impossible, I would say. I certainly know of psychologists who have felt under a lot of pressure not to disclose their cancer status. They want to work, and are able to, but they fear – justifiably – that disclosing they have cancer will affect the way they are viewed. We seldom seem to question whether, by trying to present in this way, we are actually achieving the reverse of what we wish to achieve in our jobs, both for those we are helping and for ourselves. 

Pressure not to work 

I recently wrote an article for the British Association of Counselling and Psychotherapy's Therapy Today, on the need for therapist self-disclosure. I then heard from readers who told me that their supervisors, line managers etc. who hadn't experienced cancer themselves, had instructed them not to tell their clients they had cancer and not to work after their cancer diagnoses, even though they were well enough and wanting to. Comments ranged from, 'you need to focus on yourself' to 'it's not good for those you are supporting, especially if they have cancer or family members with cancer'. 

The inference I take from this is that you can't work well and ethically whilst undergoing cancer treatment; and that if your patient/client were to find out you had cancer, that would do them harm of some sort. There is no research evidence in this area that I know of. But my lived experience of working through two diagnoses of cancer and its treatments was that it not only benefitted my relationships with my clients at that time (both those with cancer and those without), but me, too. I have heard this from colleagues as well. 

To put such pressure on colleagues who are well enough to carry on working, and who want to do so, is to marginalise and define them. It is also, intrinsically, a misunderstanding of the impact of cancer, in its initial stages.

A turning point

Apart from word-of-mouth testimonies, again, I know of no formal research in this area. But for me, it made a huge difference that a therapist I went to for support during the initial stages of my treatments, had had cancer. I really needed to know I had a therapist who was willing to be authentic sitting opposite me at that point in my life, when I was feeling ripped apart, literally and metaphorically. 

I remember a turning point for me, whilst working through cancer and undergoing radiotherapy, when I had to scratch one of my breasts because it was itching so much. I feared it would damage my relationship with my client. Much to my amazement, the client said they were sorry I was suffering, but shows of my fragility and humanity helped them accept their own. This interaction deepened the therapeutic alliance and resulted in a more successful outcome for my client, without doubt. I increasingly developed a more and more open way of working. 

Had my supervisor and I decided it was wrong for me to work whilst going through cancer treatment, my relationship with this client, to name but one, would have lacked the light and shade, breadth and depth that evolved within the therapeutic alliance after that. 

Fragile and vulnerable, powerful and productive

We are very keen these days, and rightly so, to learn from patient experiences. But somehow, the patient is still perceived as weak, even years after treatment; incapable of rational thought and the ability to analyse their own experiences accurately. And the psychologist who has or has had cancer tends to be viewed more as 'the patient', than the psychologist. We need to challenge this set of beliefs, and learn from dual perspective.

Many fellow breast cancer sufferers have responded to the pieces I have written over the years. They have validated how hard going through and coping psychologically with cancer is, and how judged they often feel by those who haven't got first-hand experience of cancer. People also feel very upset that people think they are overreacting, should move on, be over breast cancer, when they haven't even finished treatment. My fear of cancer recurrence isn't going away as I was told it would. In fact it has got worse and effects I had been told would go away haven't and are still getting worse. Others have echoed this and have been relieved that a psychologist is feeling as they are. 

The responses of colleagues to my writing have been much more mixed. I know there are psychologists out there who agree with my various stances, but they don't seem to feel able to speak out, for whatever reasons. In many ways, it's hardly surprising. I have been subjected to a fair amount of judgement, including pathogisation, from what I would call the 'cancer establishment', psychologists and others. I have been told more than once that I am overreacting psychologically to my diagnoses and exaggerating my long term and late effects. 

Some colleagues, nurses and doctors have supported me and still do, but speaking out is still such an issue for them. I recently wrote a piece for the British Medical Journal on fear of cancer recurrence, after doing a survey on the subject and hearing how many people feared recurrence. I got a surprisingly big response from doctors who had tried to continue to work on with or after cancer and had ended up feeling they had to retire, rather than wanting to. It seems that having the dual perspective may well be even harder to work with in medicine than it is in our profession. 

I'll keep writing and speaking out. I trust in my own lived experience, and the large numbers of people with a still present cancer or living beyond it – albeit often in the shadows – telling me they need me to keep going. 

Some suggestions

I'll leave you with some ways in which our practice in relation to cancer's psychological effects needs to change.

Research

- We need to think more carefully about what we ask, how we ask it, who asks it and who is involved in any research project. 

- We need to rethink notions about insider bias. Is it really such a bad thing? Everyone has an agenda. There is no such thing as objective. 

- A researcher who hasn't had cancer is not always the best person to conduct research about the psychological impact of this disease, or any aspect of it. 

- Don't just include those with cancer as tokens. Treat them as equals. Make sure they feel comfortable to speak their truth, otherwise they won't.

- How studies are set up and by whom needs careful consideration.

- How data are analysed needs careful consideration. Are those who have had cancer as involved as those who haven't, for example? 

Clinical practice

- Are we making erroneous assumptions about what having cancer is like?

- Can we listen and really hear, look and really see, rather than dismiss something that demands that we challenge our entrenched positions?

- So many myths abound about the psychological impact of cancer. Are we aware of them?

- Do you know anyone who has had cancer, is living with a still present cancer?

Have you ever listened and really heard them or looked and really seen them?

- Do you even partially understand how psychologically damaging it can be for an individual living with or beyond cancer, when their reality is diminished and dismissed?

• Dr Cordelia Galgut is a Chartered Psychologist. She welcomes feedback, via [email protected]