We will take as a working definition of ‘sickness’the process through which worrisome behavioral and biological signs particularly ones originating in disease are given socially recognizable meanings. Sickness socializes illness and disease. It is the cultural responses to disease and illness by the patient’s family and social network.
I’ll use as an example my granddaugher’s impetigo.
Right now my granddaughter is off in an Emergency Ward in a country hospital getting treated for impetago. Impetigo is a highly contagious bacterial skin infection most common among pre-school children. It is not as common in adults.
Having your parents take you to an Emergency Ward for impetago is a secondary response to a disease condition. These parents will drive 30 kms over gravel roads and 30 kms on bitumen roads to get this attention for their daughter.
When I was a child and we all got impetago they were called ‘school sores’. We would all have to be careful with washing our hands and hygiene to try not to spread them to the other children. We’d get some ointment to put on them.
Treatment in an Emergency Ward will link into the hospital’s patient management systems. The little girl would first be triaged and wait her turn for treatment in terms of the medical priority it is given in line with the other patients and the number of staff on duty over the Easter long weekend. There will be hospital records generated. Medicare will probably cover the treatment. There may be a charge the parents have to pay. They may claim some of it on their private health insurance.
Private health insurance is part of the secondary social response to disease. Health insurance businesses originally set up as mutual funds but now largely for-profit corporations are large social institutions now. Paying for health insurance is a major on-going budgetary commitment. Governments subsidize the cost of private health insurance through the taxation system. This is all part of the social response to disease.
We have loaned the kids our camping gear including camping mattresses and sleeping bags. Now I am wondering if we will need to disinfect them and how we could go about doing this. Impetago is not something I’d want to catch and it is very infectious.
This is part of a family reaction to disease. What does it mean for other family members? How do they have to change their behaviour and their lives? What do the other members of the family think of having their holiday in the country turned into a trip to hospital instead of playing in the bush and the beach?
Is it different for different family members?
Is there a family member who will be particularly caring nurturing of the one with the disease?
Who will be in charge? Who will wash the infected sheets?
How does a family decide how to pay for medical treatment? How do they decide how much private medical insurance to purchase? What priority is it given compared to feeding the family housing clothing vehicles education holidays? How many hours a week have to be worked to pay for medical expenses and insurance?
How will the school respond to my granddaughter’s impetago? Are the parents expected to notify the school? Presumably the child caught it at school. Did the school notify parents there was impetago going around? Does the school give parents any guidance on managing impetago?
How do parents learn how to manage impetago? Wikipedia seems great! Do they know whether it will get better on its own or do they know whether they should go to a chemist or a doctor? How did they decide on a hospital emergency visit?
How do parents decide how urgent a disease condition is to get treated promptly? Can it wait until they get back home? Can it wait until the doctor’s surgery opens in the morning? Is it life-threatening?
If it was life-threatening would the father drive at high speed to get to the hospital? What would the police say?
When do we call the ambulance? What services does the ambulance offer? If we have to go to the doctor or hospital how can we get there? Will a doctor come to our home? We pay ambulance cover with our electricity bill now in Queensland. That is another example of a secondary response to disease!
There are all sorts of health professionals: doctors chemists specialists physiotherapists chiropractors podiatrists psychologists acupuncturists and many types of complementary or alternative therapists. How do we choose between them? How do we decide treatment regimes?
If we go to the doctor about the impetago what will the doctor do? We will likely be asked for our Medicare card number. We may need an appointment. Some doctors will be easier to get into. Some will bulk-bill. Which doctor do we ask for? Do we want a man or a woman doctor?
Nowadays the doctor is likely to type notes about our visit into their computer. What happens to this information? The government is bringing in a national medical records system that will enable our medical records to be exchanged between doctors. What do we think of this? Is what the doctor enters into the system an accurate diagnosis? Have we any idea at all what the doctor is entering in about us? Does it matter? How can it be used? Who can access it? Can we get a copy of it? Can it be changed if we think the doctor has got it wrong?
When my granddaughter goes to the emergency ward with her impetago what is the experience like for her? What are the doctors and nurses like? Are her parents allowed to stay with her or do they have to remain in the waiting room while she is examined? Does the hospital take her clothes off her and put her in a white hospital gown? Is she sent for any tests? If so how intrusive are they?
Impetigo is curable and before long she will be better and her immune system will have responded and built immunities which will protect her against it in future. What if it hadn’t been something easily curable?
What if it was a condition we were less familiar with like leprosy? We’ve heard very bad things about leprosy but nowadays it is curable. How would we react? She might be isolated for some time while it was treated. If it is a notifiable disease disease records would be sent around Queensland Health and disease statistics cumulated.
Medical research would be done on the disease. Treatments would be trialled and new drugs sought. They would have to go through a huge array of very expensive protocols. There would be research grants to apply for which our governments would have to fund. Or not. If not there would be marches in the streets about the government cutting back on medical research. My daughter-in-law is a medical researcher a PhD. In Australia that is a very insecure job mosting contracts for a few years then applying for another contract even though the work is very skilled and high level. It makes it hard to get a mortgage. This is all part of the secondary social response to disease in our country.
If the disease was incurable and infectious it would raise general alarm maybe even a pandemic response. Say it was something like tuberculosis which is developing increasingly resistent strains. How would we react?
What if it was something psychiatric? What if a family member suddenly had an outburst of a serious mental health condition? What would happen then? The police and ambulance can be involved? Treatment can be compulsory. The courts may even be involved.
How about if the disease was a long-running chronic health condition such as asthma? Would the person with the disease have learned to manage it? Who else in the family would have learned about managing the disease? If the person had run out of medication and had an attack how would the family respond? There are support organisations set up for conditions to help educate people to manage their condition and to give each other support with it. These often receive funding. Doctors may specialise in conditions like diabetes autism and a whole range of chronic diseases. Now programs are being introduced to manage chronic diseases with teams working together on treating and educating rather than the patient visiting each in isolation without them communicating together to plan management.
People in churches often pray for healing from disease. If someone had a disease for example a pain in a shoulder that would not go away would they ask for people in the church to lay on hands and pray for healing? What would people do? What would they pray? What outcomes might happen?
If you had a self-limiting disease like the flu would your boss want you to stay home from work and avoid giving it to everyone else there? Or would you be expected to take some medicines to help you ‘soldier on’? How would your fellow workers view it?
The whole sick leave system is part of the secondary response to disease. How many days sick leave do you have owing you? What do you think that means? Would you take sick leave if you weren’t struck with a disabling disease?
The Workplace Health & Safety Act is a secondary response to disease conditions seeking to pro-actively avoid death and disability from happening. Workers Compensation insurance is another secondary response.
Public Health and vaccination are two more secondary responses to proactively keeping us healthy before we get diseases. They include things like sewerage systems sterilising our water supply putting fluoride in our water system for our teeth droves of cleaners working to keep public places clean standards and licensing of food outlets teams of inspectors rubbish collection health education to teach us simple but profoundly valuable things like washing our hands or covering our mouths when we sneeze.
Health links into home and community care assessments aged care the social security system and disability support and support for veterans in our armed forces. How our disease is described through these systems is another whole secondary response to disease linking into benefits and support services individuals are entitled to. There are reams of legislation regulations and policies and a vast army of public servants to administer them. The take up a large part of the state and federal budgets.
How we live our lives has a huge effect on how well we are. There are all sorts of influences on our life that can be part of whether we get a disease or not. Does our boss expect us to work long hours? Are we stuck for a long time in traffic jams? Do we play a violent sport? Are we a child at school getting bullied? Is our home life chaotic and violent? Has the cost of living gotten beyond us and we are cutting back on buying essentials for healthy meals? Do all the ads on television for junk food have us acting like robots eating chips and fatty and sugary foods? Is our social group into drugs or heavy drinking?
How does our culture expect us to respond to disease and health? Does it expect us to take responsibility for our health? Does it expect us to do exercise keep fit take care to eat nutritious foods and keep our weight down avoid cigarette smoking?
What messages are we getting about when we go to the hospital or doctor or whether to treat ourselves with simple alternative treatments?
If we get a major disease whether terminal or not what happens? What can we expect about getting looked after? If we had a car accident or stroke or got Alzheimer’s disease what would happen? What happens to carers? Who looks after them? How is all this decided? Now there are things like Enduring Powers of Attorney and Advanced Health Directives. How on earth do these work? What if we had to go into care whether low-care or high-care? Who decides? How does the whole thing happen? How is it funded? Are there hospices and how do they work? What about respite centres? If we die what happens about a funeral and all the costs and rounding up our affairs afterwards? How do our spouses and nearest and dearest survive after us? There are whole insurance industries built around this.
Increasingly public liability insurance is intruding into all our lives. You just about need public liability insurance to walk down the street or have a friend in for a cup of tea or swing a grandchild in a park. It’s gone crazy. What is the cost of all this? How did it get this way? Why is it needed? Who is suing whom? Will the proposed national disability insurance scheme overcome this mess?
We can keep exploring and asking these questions but maybe for now one of the things we can come away with is a realisation that Sickness is a huge structure in our society built on disease.
What is given much less attention and much much less funding is wellness health. How do we stay well? What keeps us healthy? Who in our local community can help us keep fit and healthy?
So when we get a disease it involves much more than the actual physical condition which might be a broken bone a headache tight breathing high blood pressure a heart attack a high blood sugar level a spider bite fuzzy eyesight a skin rash poor balance or an aching tooth.
It is how we respond and interpret it and it is the whole huge edifice of our society’s Sickness response.