Managing long-term illness and chronic conditions

A long-term illness or chronic health condition is any condition lasting 6 months or longer, such as asthma, arthritis, cancer, obesity, diabetes, chronic pain or heart disease. The incidence of many long-term illnesses and chronic conditions is increasing in Australia and the rest of the world due to a range of factors, including an ageing population and lifestyle issues such as smoking and poor diet.

Modern-day treatments also mean that people are living longer with diseases that previously caused premature death.

Many long-term illnesses and chronic conditions:

• are caused by a number of different health factors occurring at the same time
• take some time to develop
• last for a long time, often leading to other health problems.

Maintaining your best quality of life with a chronic condition

Chronic conditions are rarely cured completely, so looking after yourself will be about good medical advice, living a healthy lifestyle and having a positive attitude.

To maintain your best quality of life, you or your carer can help by:

• finding reliable information about the disease, its treatment and management – will help you feel you are taking a positive step and give you a feeling of control over your illness
• understanding your medication, including what it is specifically for, any special instructions and potential side effects
• setting yourself goals – short-term goals will give you a sense of how you are progressing
• developing skills to manage your pain and fatigue
• getting emotional support – speak to others who are going through what you are, as well as leaning on family and friends when you need to
• planning for the future – be realistic about your future health and discuss this with your doctor.

Pain management

Managing the pain associated with a chronic illness may include taking pain-relieving medication, undergoing physical therapies (such as physiotherapy) and other therapies, such as cognitive behavioural therapy.

Medication for pain relief includes non-prescription (over-the-counter) medication such as paracetamol (such as Panadol), prescription medication such as morphine, and may include complementary medicines.

There are also many non-drug treatments available to help you manage your pain. A combination of treatments and therapies is often more effective than just one.

Some non-drug pain-management strategies include:

• cognitive behavioural therapy – to help you learn to change how you think and, in turn, how you feel and behave about pain
• physical therapies – stretching, walking and other exercise can help relieve pain, depending on the cause
• relaxation and stress management techniques – including meditation and yoga
• transcutaneous electrical nerve stimulation (TENS) therapy – where a small electrical current passes through the skin via electrodes, prompting a pain-relieving response from the body
• heat or cold – heat packs can relieve pain from musculoskeletal injuries, and icepacks can help reduce swelling immediately after an injury
• massage – this is more suited to soft-tissue injuries and should be avoided if the pain originates in the joints
• acupuncture – involves inserting thin needles into specific points on the skin to encourage the body to heal itself and release endorphins, which are natural pain-relieving compounds within the body.

Always be guided by your doctor or healthcare team, and follow their instructions carefully to avoid making your pain worse.

Looking after your mental health

The symptoms of chronic disease, like tiredness, aches and pains, are often not visible, so others cannot always appreciate their effects. It is not just physical symptoms that can affect a person, but the limits on lifestyle and living with constant pain can take a toll mentally as well.

Worrying or thinking negatively about possible situations adds to your anxiety or stress, affecting your overall health. Ways to reduce worrying include:

• When you find yourself starting to worry, write down your concerns and, importantly, the possible consequences, even if they are negative.
• Find information about your prognosis and likely outcomes – you may feel more in control.
• Talk to a friend, join a support group or seek specialist help through a psychologist or psychiatrist. They can help you realistically assess your worries.
• Focus on a variety of things each day – give yourself daily tasks and make time to read, walk or watch a movie. Do activities that challenge your mind, such as crosswords or other puzzles.

Research shows that poor mental health can actually make your physical symptoms worse. This is called ‘psychiatric morbidity’. Victorian public hospitals offer ‘consultation liaison psychiatry’ services to help prevent, diagnose and treat this condition in hospital patients who are being treated for a physical health problem. Ask your doctor about these services next time you are in hospital.

If when you are at home you feel your condition is overwhelming you emotionally, it is important that you speak to your doctor or another healthcare professional about your feelings. Staying as well as you can when living with a chronic condition or long-term illness will give you the best quality of life.

Good lifestyle choices with a chronic condition

We know from research that maintaining a healthy lifestyle can help you feel as well as you can while living with a chronic condition. This includes eating well, doing as much physical activity as your condition will allow and getting good rest.

Maintaining a healthy diet can be helped by:

• having small amounts of food often, even if you do not feel like eating, rather than three heavy meals
• choosing nutritious foods that you enjoy
• avoiding sugar-, salt- or fat-laden snack foods
• telling your family and friends about your dietary needs so they can support you.

Trying to do some physical activity each day, even if it is only a small amount, can help with managing pain and lift your mood. Speak with your doctor or physiotherapist about exercise that may help your condition.

Sleep is also very important if you have a health condition. To help you get enough good sleep:

• Avoid napping during the day.
• Avoid excessive bed rest whenever possible.
• Avoid stimulants, such as caffeine, before bed.
• If you are able, exercise during the day so your body is tired at night.

Dealing with multiple health conditions

Dealing with multiple conditions may mean that you need to deal with a number of healthcare professionals. The most important thing to remember about seeing multiple healthcare professionals is to let each one know who else you are seeing and for what health condition.

Most importantly, let them know what other treatments and medication you are having. Sometimes, medication can have a negative effect on you if it is taken at the same time as another. This includes complementary medicines, such as herbal supplements.

Managing your healthcare team

Sometimes, your healthcare can be better coordinated if your various health professionals talk to each other directly, but you need to give them your permission first.

Allowing all the members of your healthcare team to share information about your care helps them to gain a more holistic view of you and your healthcare needs. It can help you to:

• avoid having to repeat health information for each practitioner
• avoid having to re-take medical tests, such as scans and blood tests
• understand which healthcare professional to ask about which problem.

To help coordinate your health information among the members of your healthcare team:

• Give consent for all the members of your healthcare team to share information about your care.
• Appoint one healthcare professional, usually your local doctor, to oversee all your care (including drawing up a treatment plan, which can be shared). This will help you and your doctor track your care and find problems more easily.
• Write down your health professionals’ names and what they do in your care. Give each of them a copy of this information.
• Ask the other members of your healthcare team to tell your primary doctor about tests, medicines, treatments, physical therapy or food limitations they have suggested or prescribed.
• Ask each member of your team questions about your care and keep notes on the answers in a notebook. Take this notebook to all appointments for easy reference.

Support from others – support groups, family and friends

Social support can help you maintain your quality of life when you have a long-term health condition. To help you find and maintain both practical and emotional support:

• Plan to catch up with family and friends. Keep a regular schedule of contact throughout each week.
• Tell your family and friends about your condition, and let them know how they can help you.
• Consider new sources of support, such as support groups, clubs, interest groups and volunteer opportunities.

Support groups allow you to both get and provide advice and support – to connect with people who are experiencing what you are also experiencing. They can increase your knowledge about your condition or illness and help you learn to live more comfortably with it.

There are hundreds of support groups in Australia and their arrangements vary. Many are centred on regular meetings held in a healthcare facility, community centre, local hall or council meeting room. Others are online, offering a variety of ways to connect, including message boards and chat forums.

To find a support group, you can:

• ask your doctor or specialist
• ask someone you know who has experience with the same condition or healthcare need
• look online or in the phone book
• search the ‘Services and support’ gateway on this website.

Where to get help

• Your GP (doctor)
• Psychologist
• Psychiatrist
• Counsellor