chronic illness – Patching the Soul

Everyone disapproves of stigma, and yet that doesn’t seem to have had an impact on the way in which mental health professional themselves continue to stigmatize those with mental health problems. At this point I can hear all the professionals reading this saying ‘but I don’t do that,’ and indeed you (singular) may not. Yet those of us within the professions who have been mentally ill have experienced it. Mental illness is still something that happens to other people, but not to people like us.

A good friend of mine, Maureen Deacon, died this spring. She had been a Professor of Mental Health before taking her retirement, and I first met her more than thirty years ago when she was the ward sister in the Professorial Unit at Withington Hospital in Manchester and I was a Senior Registrar in the ward downstairs from hers. We had several friends in common and kept in touch over the years. I also knew her partner very well. In the early 1990’s Maureen persuaded me to recklessly join her on an overland bus journey from Manchester Piccadilly to Leningrad as it then was, which took 4 days in each direction. I remember someone getting on and asking if it was the Blackpool bus, and we all shouted ‘No, Leningrad’ to the interloper’s complete bemusement. You bond with someone when you both eat nothing but hummus and pitta: the only food you have brought with you for the journey, day in, day out. We hadn’t seen so much of each other in the last few years but we continued to meet every now and then for dinner and chat with our respective partners and to see each others’ feline companions.

Maureen had been unwell with cancer for some time. I wasn’t able to attend her funeral because I was in Orkney then, but I know she wanted everyone to dress in bright colours for her farewell, and not come in black. She was always very upbeat, hard-working, utterly reliable and a great friend. I also knew she had been depressed, both before and after her diagnosis with cancer. She never said much about it, but we talked briefly on occasions about what it felt like and taking antidepressants. She knew I had been unwell on occasions too. So it was a shock for me to read in the paper she completed just before her death, and published this month in the Journal of Psychiatric and Mental Health Nursing, that she had experienced six episodes of depression, and had seriously considered suicide during at least one of these. I’m ashamed I never picked up how bad things had been for her, but as she said in this personal account of her experience ‘I was an expert at hiding it.’

She wrote :‘being depressed is worse than having advanced cancer’ and at that time she had a life-limiting illness. She was acutely aware of the stigma that depression carries. This, she said, had two aspects. The self-stigma that is experienced by those of us who get depressed:

“…I tend to see my mood disorder as a character flaw-evidence of my weak and neurotic nature. Currently this is reinforced (for me) by the interest in mental health and resilience, clearly something I’m missing, in some sense at least. Secondly there is the guilt and worthlessness hat comes along for me with depression experience: ‘I should not feel like this I have a blessed life, a partner who loves me, a lovely home…’”

But also the stigma that depression carries, perhaps more so than ever, within mental health services in the UK. Even severe depression is not deemed to be serious enough for mental health nurses, working with Community Mental Health Teams, to be involved in the care of, except if the person is suicidal- and even then only for a limited amount of time. Depression, Maureen said, has been called one of the ‘coughs and colds of psychiatry’ and I’ve called out junior doctors for referring to anyone not under the care of mental health services who is anxious or depressed as the ‘worried well’. This kind of language doesn’t help the mental health professional in their company, quietly keeping their own counsel or indeed anyone with depression to feel any better about themselves. Diminishing their experience does not speed their recovery and discourages them from seeking help. When I was well such attitudes made me angry, but when I was unwell it certainly deterred me for a long time from publicly admitting I had any problems at all.

During my time as a consultant I saw and treated many nurses with mental health problems- students, mental health nurses, general nurses, ward sisters. After the case of Beverely Allitt, the nurse who murdered several children in a paediatric ward, I remember trying to help a seriously depressed young woman who was petrified that having treatment for depression would mean she was thrown off the general nursing course. There seemed, from her point of view, to be very little distinction being made between having treatable mental illness and potential psychopathy by her course directors. This was her understanding, but I would not be surprised if she was right. I’ve met health service managers with similar difficulty in grasping what mental illness actually is, how it affects a person, and how a person who suffers from it is more at risk of harm from others than vice versa. I’ve also seen mental illness treated very differently from physical illness by some managers. I was asked for information about a ward sister who was an in-patient on my ward through the inter-organisational route, following conversations between hospital managers, which was a blatant attempt to breach my patient’s confidentiality. Would this have happened ifshe had been receiving care for a physical illness? When I personally made my first very tentative visit back to unit I was working on when I had been off sick with severe depression, I received a letter from the Personnel manager a couple of days later, saying ‘You looked well. I hope this means you are returning to work soon?’

As Maureen said in her paper:

‘the sheer terror of work colleagues knowing I was unwell was enough to get me moving. Ironically, on the two occasions I was persuaded to take sick leave, I got better much more quickly’.

Reading her account fills me both with admiration…and regret. How I wish we had been able to talk more about how she was feeling, but she didn’t feel able to, and I never picked up the cues.

I will always miss her quiet wisdom and common sense.

Her conclusion was that, to really understand stigma as mental health professionals we have to get away from thinking mental illness is something that happens to other people . Not to us who are always resilient, invulnerable, immune to stress, and as a result far too ashamed to admit when we experiencing something which I can assure you is far from having something like a common cold.

Reference

Deacon M. Personal Experience: being depressed in worse than having advanced cancer. Journal of Psychiatric and mental Health Nursing, 2015,22,457-459.

When I was a medical student, I remember one ward round when we were gathered around the bed of a patient who was breathless and coughing up blood. She admitted to being a heavy smoker. The surgeon gave her his usual stern ticking off about the dangers of cigarettes, and then we all trooped back to the doctor’s office where he took the patient’s chest x-ray out of the envelope and pushed it up onto the light-box on the wall.

“Look at the mass there he said,” pointing to dense shadow in the left lung, “almost certainly a carcinoma.”

And then he calmly took a packet of Senior Service cigarettes out of the pocket of his white coat and lit one up, puffing away as we discussed the prognosis. You have to understand this was the Stone Age. People did still smoke in hospitals, even doctors. But some things haven’t changed. I think many doctors still have a peculiar belief in their own immortality. That knowing all about disease not only gives you power over it but makes you immune to it. It begins at medical school. Many medical students aren’t even registered with a GP where they go to university. They alternate between being sure they have every disease they learn about and denial of their own susceptibility. And it carries on. Doctors generally don’t smoke now, but we still abuse ourselves in other ways, notably with alcohol. We are tough and macho, don’t admit to weakness, and rarely follow the advice we give our patients, yet expect them to wholeheartedly agree with us.

Last year I had to come to terms with the fact that I’m not going to be immortal after all. I don’t mean that in the sense of transcendence of my soul. I’ll keep out of that argument for the moment. Rather I am not going to live forever, and life might get quite a bit harder for me physically in the future than it is now. To add to the anxiety, depression and hypothyroidism, I was diagnosed with progressive kidney disease.

Okay, so I know I will not live forever. Of course I won’t. Indeed would I really want to? There have been times when I’ve been so depressed that I’ve wanted to end my life somewhat sooner. The thing about depression for me, unlike physical illness, is that it feels like if I were to die from it, it would be because I wanted to. I have control. Even though I know rationally, as a psychiatrist, that what I perceived I wanted would be strongly influenced by my mental state at the time. But there is, I think, a part of all of us that secretly hopes we can cheat fate and carry on forever (only while enjoying of course the perfect health of youth). When I was a young child, the idea of dying seemed so impossibly far away as to be almost irrelevant to being alive. Then my grandfather died followed by my father, both at ages not so different from where I am now. When people close to you die, death became a real possibility for you too.

People who have chronic illness are more likely to experience depression and anxiety, and the more chronic illnesses you have the greater your risk. In the last research project I worked on in Manchester, we attempted to offer psychological therapy to people with diabetes and/or heart disease who were also depressed. What was striking was how few of these people were actively receiving help despite the fact that all them had been screened for depression on an annual basis as part of the payment incentive system for GPs in the UK. Some of them had never discussed their mood or suicidal ideas with their doctor. They didn’t want to, they were embarrassed or they didn’t see the point, so they suffered in silence. It can feel stigmatizing having chronic illness, and having a mental health problem as well just doubles the stigma.

So it turns out I have a genetic disorder of the kidneys that I’ve had for many years, but didn’t know about before, and which is going to get worse as I get older, at a rate as yet undetermined. There is a good chance I will eventually need to have dialysis. Despite feeling fitter than I have for years, it is as though my body has let me down. Something is happening inside me over which I have no right of determination. Like many people with chronic illness I feel my useful life has now become shorter, so I’m beginning to speed up my rate of travel, picking up again those things I started to do many years ago but dropped because of my career, and aiming to achieve a few of them while I’m still quite healthy. Not quite a bucket list but something similar. It has increased my level of anxiety but I don’t feel depressed about it yet because I’m still in control, trying to keep myself fitter than I have since – well ever.

Or maybe it’s because I’m just being tough…. and I still believe I can win.