Introductory idea: The ‘dance of the everyday’
Psychology tells us that most of what we do each day is done by rote or habit, without us really having to think much about it. Something I call the ‘dance of the everyday’. Just as in a dance, we must learn the routine and how it fits with the pattern of the music and, if we have one, how our family behaves (their strengths and weaknesses), so in life.
A pituitary condition can disrupt the rhythms of life, imposing a new order that can be difficult to adjust to. The disruptions can be so significant that the person with the condition can end up feeling alienated and confused by the changes they’re experiencing, misunderstood and disbelieved by others, leading to the loneliness that is social isolation. How does someone end up there, and what can be done about it?
The difficulties of diagnosis
Some of the problems could be said to start from diagnosis. It can be stressful, shocking and traumatic to be told that you have a brain tumour. Pituitary tumours are mostly benign (i.e., non-cancerous), but you may not know that when your diagnosis is first communicated to you.
Say ‘tumour’ to most people and they will assume they have cancer. With the pituitary being in the brain, being told you have a pituitary condition can conjure up some very scary mental images for people. For all that doctors aim to be very careful in how they provide the diagnosis to patients, it’s inevitable that there are going to be some people who end up feeling shocked and, possibly, traumatised. Stress is highly communicable; as humans we’re wired to pay attention when other people are stressed, because if something is affecting them it might have implications for us too, so any shock and trauma is likely to ripple through family and friends.
When you’ve experienced something traumatic and stressful, it can really help to be able to talk to others who understand what’s happened to you. Judith L Herman in Trauma and Recovery talks about the importance of community in helping people to recover from traumatic experiences. On page 101, she observes that,
‘In ordinary bereavement, numerous social rituals contain and support the mourner … By contrast, no custom or common ritual recognizes the mourning that follows traumatic life events.’
On the following page she goes on to say:
‘Sharing the traumatic experience with others is a precondition for the restitution of a sense of a meaningful world. In this process, the survivor seeks assistance not only from those closest to her but also from the wider community. The response of the community has a powerful influence on the ultimate resolution of the trauma. Restoration of the breach between the traumatized person and the community depends, first, upon public acknowledgement of the traumatic event, and, second, upon some form of community action.’
Part of the problem with pituitary conditions is that they’re not easily understood by others. Unlike cancer, which most people will have some knowledge of these days, most people probably haven’t heard of the pituitary, and won’t know what it does, how important it is, or that there’s a set of diseases associated with it that can be far-reaching in their effects. Some healthcare professionals take the idea of patient-centred care to mean that they only ever talk to the patient, but someone who is shocked and stressed can’t take in information properly. So, a patient’s understanding about their condition and what’s going to happen to them next might be quite limited in the early days.
For conditions as complex as pituitary conditions, this is not good. Patients face a gamut of different tests and from early in the process, pituitary patients need to be working towards becoming experts in their condition. That’s a lot to take on, and being pointed to The Pituitary Foundation where you can find out more information about what’s happening to you would be very helpful, but unfortunately far from being directed towards The Foundation, lots of people are left to stumble over it themselves.
Chronic conditions and ‘uncertainty’
As a species we’re very good with cyclic change – we’re used to the sun coming up and going down, getting ill and getting better again. Even with cancer these days, we’re used to the idea that things are curable albeit after some gruelling treatments and we expect those who survive to get back to pretty much how they were before. And that goes double for common illnesses such as colds and flu and the aftermath of accidents resulting in broken bones where the treatments are much less demanding on the patient. But, a pituitary condition is a long-term health condition that can’t be cured, it can only be treated. The idea that someone might be so affected by their condition that the outcome is uncertain and ‘getting better’ might mean that their condition is ameliorated by drugs but that they can’t get back to normal functioning can be somewhat mind-bending for both the patients and their family, friends and wider community.
Humans aren’t good with uncertainty. It’s much easier to support someone through something if you know how long it’s going to last for and what to expect along the way. Pituitary conditions can take people into unknown territory. The conditions and their treatments can change how someone looks, as well as how they react and respond to things. Some people will end up with crushing fatigue that limits what they can physically do and brain fog that affects what they can think about. Pituitary patients can be shocked and surprised anew when confronted by reactions that they don’t recognise in themselves. They can start to wonder if they’re going mad on top of everything else they’re dealing with. Their family and friends can find it very confusing and difficult to understand too.
Adjusting to uncertain situations
We’re used to the idea that being ill is a consistent state, the idea that someone might have a condition that fluctuates such that what they can do in the morning is different to what they can manage to do later in the day, and that that can shift and change from day to day is bewildering and confusing for all concerned. When someone is ill with flu it can be easier to shift from the ‘dance of the everyday’ where everyone in the household does their usual thing, to the family dancing attendance on the person who isn’t well.
But the timescales involved in pituitary conditions can leave family members wondering how long they might have to dance attendance for. The uncertainty around what support is needed and for how long might not be known by the patient or their family and that can put tremendous pressure on how the family functions. It’s very hard to be disconnected from yourself and your family, thrown out of all your everyday routines and habits and methods of engagement and profoundly unsure about how long that situation will last. Death is straightforward – the person isn’t there anymore – but someone who is profoundly changed but still present; that’s quite a conundrum for all concerned.
‘Someone who is profoundly changed but still present; that’s quite a conundrum for all concerned.’
How does ‘community’ play a role in this?
The Pituitary Foundation offers a community that genuinely understands what it’s like to live with a pituitary condition. They have a lot of useful information as well as other people to talk to. Some of those people are healthcare professionals whom you can ask for advice about how to understand what’s happening to you and what might be next on your treatment journey. But there are other people who’ve been on this journey before you who will also have insights to share.
here’s a tremendous psychological relief that comes with knowing that it’s not just you that finds it difficult to understand and to live with. And that support and information is there for family and friends too. In dance terms, it reminds me of learning a complex country dance where the people who already know the dance explain it to you in ways you can understand, then hold your hand as you gradually learn what’s required of you.
