What does language do? It reflects and expresses the thoughts you have.
Your choice of words or expressions reflects your cultural attitudes, your political, cultural and moral beliefs.
You cannot hide these as they are the backbone of who you are. You can try, you can train yourself, you can learn new language. You can train yourself to stop before you say something which may be tasteless or insensitive, or just unacceptable. But to do that you have to be consciously aware all the time.
As you grow up you learn and absorb what you hear and see around you. Especially from those who have emotional relationships with you. Mum and dad.
And then from what you hear others say in your community, or on tv! Or what you read in the newspapers.
These attitudes and learned responses cannot be simply forgotten and unlearned.
So in the 50s and 60s (and later) my parents referred to people being demented as an insult or a joke. And even now doctors refer to patients with dementia as ‘dementing’. These people use language in a way that expresses their attitudes and their work.
Now if we talk about use of that word sufferer…
What does sufferer convey? Quite simply that a person is suffering. And what is suffering?
Pain, either physical, mental, emotional or psychological.
Unpleasant feeling or sensation.
But ‘suffer from’ is also used to denote that a person has a disease, not that they are in pain. Hence, suffer from Parkinsons disease, or cancer, or dementia. That is, linguistically, incorrect use of the word, but it is accepted use.
But when you hear a person described as suffering from a disease you assume that it is painful in some way, physically, emotionally, mentally or psychologically. When it may not be. And after all, people experience pain in very different ways. And at different levels.
Which reminds me of that stupid doctor thing…tell me what level your pain is on a scale from one to ten. And how it compares with yesterday. Better or worse? Yeah, try that when you have cognitive impairment?
Come back to that word ’demented’. It really is a Victorian adjective to describe a person with mental ill health. Or old. Or both. And to denote that the person is not normal, and should be hidden away, locked away.
That’s what they did. In asylums.
What you didn’t see you didn’t know about or think about.
In these present more enlightened times, we differentiate between diseases because we understand a lot more about them. Depression. Dementia. Psychosis. Schizophrenia.
Ah. But not dementia. Of course. Because dementia is a physical disease, not a mental disease. It is a physical disease in brain cells, in the tissue which transmits signals and stores memory.
So a person has the disease that results in dementia, not dementia itself, as this does not exist as a disease. It describes symptoms.
And that person may or may not experience physical, mental, emotional or psychological pain as a result of the disease. The pain might be caused by the knowledge of having brain disease, or by the effects on day to day living, or of losing memories and words and sensations.
Why, then, should we be concerned about use of the word sufferer for a person living with dementia? Or suffering from dementia?
I think because it communicates the wider assumption that the underlying brain disease is destructive of a person’s life, that the pain it causes destroy the capacity to just go on living.
So if you lose a finger in an accident, are you a sufferer for the rest of your life? There may be one or two things you cannot do, or have to do differently, but is this pain? Does this cause your life to be painful? No. It might be irritating, but you get on with living.
And so, if you live with dementia you have to get on with living. It is irritating when you have to learn ways around little difficulties. It is upsetting when you cannot recall words, or faces, or names…or when you feel lost for a few minutes. But is this really pain? And suffering?
So can we agree. If you feel you are suffering that is a personal interpretation of how you feel. It is a judgement no one else can make of or for you.
And thus we should avoid using the term suffer or sufferer or suffering with or from dementia, because you cannot possibly know how I feel. My pain is my own. If your perception of dementia is of pain that is your own perception and no one else’s. And if you do not live with dementia, your perception is based solely on what you have learned from others, from media, the press, radio, tv, and nattering down the pub or in the supermarket.
Please, health professionals, stop using the term ‘suffering from’ in relation to any disease. That is your attribution, not the patient’s lived experience. It is a convention. It is historic language based on the medic treating diseases and suffering. It is a guess that the patient is in pain. And it is an invitation to the patient to feel pain. Suffering from cancer. Suffering from depression. Suffering from Parkinson’s. No. Living with cancer, depression or Parkinson’s. Or dementia.
If you describe living with dementia as suffering you are inviting people to trust your professional knowledge and believe that dementia is indeed painful. You create a condescending image of a person whose life is painful, suffering, dreadful, just because they have the disease. You encourage a person with the diagnosis to believe they are suffering.
Why does all this matter?
First, there is no cure, so a perception of suffering and pain is hugely worse when there is no possible end other than death.
Second, the five steps to wellbeing – keep learning, stay engaged, keep active, give, be mindful – rely on being positive about life.
When a person receives a diagnosis of dementia they see a black void of suffering, of misery, and of death, which lasts for months for many. Why? Because of the wholly negative associations with dementia.
Of course it is unpleasant. Of course it sucks. Of course it is a shock.
But you’ve got to be positive, and that starts with professionals. Tell us to go on living, go on doing what we enjoy, go on being active. Don’t change anything. A diagnosis is just one day in the whole journey, and by that time you are well on the way. Your brain disease hasn’t just started that day. You’ve probably had it for twenty years or more.
Professionals must emphasise the positive, the normal, the ‘get on with living’. The smiles, the cheerfulness, the upbeat voices…these matter. Otherwise it’s like a visit to an undertaker to have a preview of your death.
My GP told me for two years that there was no point in getting a diagnosis because there was no cure. (He also said there was no treatment…wrongly, as two years later I got Donepezil. Thank you.) but there is a point in knowing. Getting on with life. Understanding your symptoms. Knowing why. Making preparations. But if it’s all negative perhaps we shouldn’t know.
Of course it is not all negative as long as we see the positives and get Tv house support when we need it.
For Pete’s sake stop telling us to avoid risks, to do less, to avoid fatigue. You’ve got no solution for us so just support us, to get on with our lives as best we can and enjoy ourselves.