Living with Chronic Illness and Pain
Taking control! Self-managing your chronic disease
Living with a chronic disease can be a challenge, not just the disease itself, but the associated problems that it brings. Self-management is about taking an active role in managing any long-term health condition, in partnership with health professionals, family, friends and carers. Self-management is not about going it alone.
As with acute conditions, the role of appropriate health professionals (general practitioners, specialists, physiotherapists etc.) is very important in managing any chronic health condition.
Self management
- Deals with the consequences of disease not its physiological roots or mechanisms
- Main concerns are: problem solving, decision making and building patient confidence
- Places the person with the condition and the health professionals in a partnership situation (neither is dominant)
- Recognises that the person with the condition will be responsible for their own health management on a long term basis.
How is chronic disease different to other health problems?
Many health problems can be considered 'acute'. These 'acute' problems are those, which come on quickly and can usually be treated with medications or maybe surgery and following a period of recovery, normal health returns. Examples include influenza, appendicitis or gall bladder inflammation.
Chronic conditions tend to come on more slowly, sometimes taking years before specialist attention is sought as people often adapt to the symptoms (eg. annoying aches and pains in joints with arthritis or shortness of breath with heart problems). The list includes such conditions as arthritis, osteoporosis, diabetes, asthma, heart conditions and related depression. There are often no quick solutions to these conditions and rather than the disease itself, it is the consequences of the conditions which can have the greatest affect on daily life and personal relationships.
Chronic conditions can be accompanied by on going pain and tiredness that can lead to frustration and sometimes depression. Some people slow down or stop doing their routine tasks or activities, which in turn may lead to further disability.
Many people living with a long-term health problem develop an awareness of their own bodies and of the ups and downs of the physical and emotional effects caused by the condition. They are often very well equipped to judge the effects of medications, and other interventions, developing a feel for what is working for them at any one point and what is not.
What do I need to do to effectively self-manage my chronic illness?
To be able to self-manage your condition you will need to gain the skills and confidence to:
- Manage the work of dealing with your illness.
- Manage the work of continuing your daily activities.
- Manage the changing emotions brought about by chronic illness.
You can do this by:
- Learning all you can about your condition, its treatment and management
- Asking about and understanding your medications
- Incorporating appropriate activity and fitness sessions into your day
- Learning and practising relaxation techniques and problem-solving skills
- Improving your nutritional habits
- Dealing with the fatigue, frustration and sometimes isolation that chronic disease brings with it
- Working in partnership with health professionals
- Knowing and using community support groups and other useful resources
- Dealing with the emotions which seem to be part and parcel of everyday life.
Chronic disease self-management courses are available in many areas of Australia. A team from Stanford University USA has designed these courses, headed up by Dr Kate Lorig and have been delivered and evaluated in many countries (America, UK, NZ and Canada) as well as most states of Australia.
Recent Australian research (Dec 2002) has shown people who attended self-management courses have:
- Reductions in their pain, less fatigue and health distress
- Increased their level of activity and exercise
- Have greater confidence to continue to self-manage their condition.
These improvements were maintained over a two-year period.
The courses are usually conducted over 6 weeks (2.5 hours per week) in community environments with lay leaders who have themselves both been trained to deliver the course and have a chronic illness. There are no more than 15 people per course that has set teaching protocols and standard materials and manuals. For further information about these courses contact the Arthritis Foundation in your state. If no course exists in your area please talk to your doctor, health professional or your VAN office on 133 254 for assistance and referral to appropriate training to help you self-manage and get the best out of life!
Where can I go for help?
For further information and assistance with your chronic condition and its treatment contact the relevant organisation including:
- Asthma Foundation
- Diabetes Australia
- National Heart Foundation
- National Stroke Foundation
- Cancer Society