Chronic disease sufferers need support
Chronic illnesses or diseases are conditions that last for longer than three months. In many cases they last for many years or a lifetime. Examples are diabetes, cardiovascular disease, cancer and chronic pain. Some conditions can be difficult to diagnose, and people may spend months or years trying to get help before they can get a diagnosis – this has been the case for many women with endometriosis. We should also consider mental health conditions such as depression, anxiety and personality disorders as forms of chronic illness.
Chronic illnesses and diseases are complicated and can be hard to live with. Constant management is required, which may involve ongoing adjustment of the types and dose of medication, the specialists that should be seen, and keeping an eye out for new symptoms.
I, for example, have a number of conditions that I need to give a lot of time and energy to. I have a degenerating disc in my lower back which results in chronic pain. I am on a number of medications and have previously attended a pain rehabilitation course at a hospital, and I still see an exercise physiologist to help support my back for day-to-day living. I have also had issues with anxiety and panic attacks since I was a child – I have used medication on and off over many years and utilise a Mental Health Care Plan every couple of years. Finally, I need to have a colonoscopy every one or two years to monitor the number and type of polyps I produce, as they have the potential to develop into cancerous polyps with few or no symptoms.
This is a more personal report than usual, but my own experience with chronic health problems has taught me a number of lessons at both the personal and policy levels.
On the personal level, I have found it important to have a community who understands and supports me – this could be friends and family, or support groups specific to the illness. It’s also important to try and get the right treatment for the condition and ask for help when you can.
At a policy level, there need to be more linkages between services to assist people who are using health services a lot to navigate the health system more easily. This can be particularly hard for people who are older, have lower levels of literacy or English, or have experienced discrimination. Chronic illness impacts other areas of life as well, so departments such as employment, transportation and education should remain aware of how their structures may be making things harder for people with chronic illness or disease.
This month, the Addison’s Disease Association of Australia is hosting a seminar for people with the disease and their supporters, covering information about the causes of the disease, managing medications, and also providing the opportunity to meet with others who have experience with Addison’s.
Health Consumers NSW has a chronic disease network that represents consumers and carers who are affected by chronic conditions. For more information about the network, email firstname.lastname@example.org.