Carers and others

My husband is currently away for a week, leaving me, if not alone, then without him. I am very fortunate to have him, but also slightly resentful at times, which in turn makes me feel guilty. It’s not down to anything that he does, it’s everyone else. Oh, you’re so lucky to have him; He’s so good to you; Not many would have put up with this.I used to nod and agree with these admittedly well-meant assertions, but not anymore. Sometimes I even wonder whether he is lucky to have me – I’m not that bad. But it is in the context of mental illness that this hurts most, because it is that that makes me apparently so unappealing as a partner. To give him his due, I don’t think he agrees. I am lucky enough to be well more than I am ill, though, because when I’m ill there is definitely a shift in power. I hesitate to use the word power, but realistically that is what it is. At these times the shift is from partner or lover to carer, with all that that implies for both of us. For me, it is a descent into a dependent, childish role, devoid of responsibility; for him, it is the opposite, with the added burden that no-one is looking after him. It can be very difficult for both of us to throw off these roles when I get better, although easier for me, as my memory of illness is often hazy. For him it must be harder; the person he cared for, and for whom he made decisions, has suddenly been replaced by one who challenges him, and can’t understand his need for distance. He is emotionally remote when I am ill, and it’s hard for him to flick that switch back over, the mechanism takes more time. This can be very difficult for me, but I do appreciate that it is protective for him.

As health professionals, I think we do try hard to listen to relatives or carers, because they can give us vital information about the patient. What we may not always do as well is to think of them, and their needs, at what can be a very difficult time, the priority understandably being the patient.

My husband is far better than me at approaching people, asking for things and arranging matters – but he is rendered pretty useless by the health service. He told me that he thought of doing medicine, but decided not, as he didn’t like ill people, almost certainly a sensible decision. Although I suspect that it’s not ill people as such that he doesn’t like, more the miasma of anxiety and uncertainty that can hang over hospitals and surgeries. I don’t think he had any views at all about mental health before I became ill, and the shock was profound. He says he finds me completely different when unwell – that I even smell different – and as such is a willing convert to biological psychiatry. Sometimes I wonder if this is actually a good thing, as it doesn’t easily allow for human sorrow. Medicalisation can make it difficult to be sad.

I don’t think that we ask carers often enough about their understanding. We are relieved if they are supportive and sympathetic, perhaps partly because it takes some of the burden from our own shoulders. We worry if a partner appears unkind or abusive in any way, because our first duty is to the patient and to protect them. Yet this partner may have been living under intolerable stress. I like to think that I am very careful as a doctor to ask patients what they have understood, to summarise, and check; but I don’t think I do this enough with carers. I would be interested to know what the different members of my family would say if asked about my illness, and I include my daughters, who are old enough to understand and form their own opinions. They are the ones who have seen me, day in, day out; they are also the ones who have experienced the results of my illness. They may find it difficult to differentiate normal sadness, unhappiness, irritation, from that which is not; hardly surprising as it is a grey and uncertain area. 

There are further problems with mental illness in that people can have widely divergent views and present them as fact. Even diagnoses can be difficult, with criteria that can, at times, be subjectively interpreted. Someone with a biological background may give a hugely different explanation than someone raised more in attachment psychology, and who is to say who’s right?

I have seen a number of psychiatrists (probably less than some, given my lengthy history), and have had different diagnoses and explanations over the years. If this leaves me confused, what must it do to my family? My parents found it very hard, though seem much more accepting now. But even today, I hear them talking about other family members with mental illness, and am quite shocked by their assumptions. Sometimes intimacy can lead to particular communication difficulties; I’m not sure that I’d call my wider family intimate, but there is that sense of knowing about them, in a way that of course we don’t. It is a shock when the people closest to you behave unexpectedly, far more shocking than when it’s a stranger, and it can be very hard to both understand and believe it when it happens.

Familiarity and fear go hand in hand for many carers, and most work out their own ways of coping. I don’t want to be the main source of information for my husband, as what I tell him may be skewed, both by illness and normal fears. But just think how many hours the carer spends with you, and you with them – compared with the psychiatrist. The psychiatrist has a brief, yet important role, and some of that must be to help the carer to care.

Leave a Reply