Living with your chronic condition: how to manage your health and wellbeing
Monday 10 August 2020
Chronic health conditions are persistent, long-lasting and often affect a person’s quality of life. Some chronic conditions are degenerative, meaning they get worse over time, some will remain fairly steady after diagnosis and others can come and go over months or years. There are many different chronic conditions, and each has its own set of complex causes and symptoms.
Chronic conditions can occur at any age, although they are more common as people get older. Half of all Australians have at least 1 of the 8 major chronic conditions that the Australian Institute of Health and Welfare regularly reports on, which include arthritis, asthma, back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes and mental health conditions.
Other common types of chronic conditions include musculoskeletal conditions, autoimmune conditions and neurological conditions like epilepsy, multiple sclerosis (MS), cerebral palsy, Parkinson’s disease or Alzheimer's disease.
Your condition may pose significant challenges for you and your family and almost certainly bring about some big life changes. But with the right support, resources and education, you can adjust to living with your chronic condition.
Finding out you have a chronic condition
As with any major change in life, your diagnosis might affect the way you live, see yourself and relate to others. It might be difficult to cope with the diagnosis of your chronic condition. It’s normal to feel frustrated or upset. But once you have moved past the initial shock of your diagnosis, you can learn how to manage both your health and the stress and emotions that come with having the condition.
If you have a condition that cannot be cured, the focus of your care will be on managing your health so that you can still enjoy life and your day-to-day activities. This means focusing on:
- symptom control
- mental wellbeing
- planning for the future.
Ways to manage your condition and boost your mental health
There are things you can do to help manage and come to terms with the new direction your life has taken.
Learn about your condition
Understanding your condition starts with reading and researching widely about your symptoms and treatment options. Your first point of call should always be your treating doctor and health professionals who can give you specific advice based on your personal situation. You also can check out credible websites (like us, Queensland Health, or Health Direct), visit your local library, access support groups and find online groups to further your own knowledge and talk to other people with your condition. But be careful, don’t fall into the trap of listening to everything Dr. Google has to say – not everything you read will be true! Some people will feel more confident after doing lots of research and reading, while others might find lots of ongoing education stressful – it’s up to you to decide what works best for you and what makes you feel informed.
Keeping a diary of your symptoms to track whether they improve or worsen may also be helpful when discussing your treatment with health professionals. You’ll feel more in control of your health and better able to make informed decisions regarding your own care if you take the time to understand what’s happening in your body.
Find a GP you feel comfortable with and can trust
Being informed about any treatments, medicines or tests that your doctor or other health professionals recommend will allow you to get more out of your healthcare – and that means asking questions. Having a good relationship with your GP and any other health professional you see regularly will make it easier and help you feel more comfortable to ask those difficult, but important questions and work with them to look after your health.
You could start by writing down questions for your treating doctor and then working together with health professionals to set goals and make a treatment plan. Having a treatment or management plan will help you to understand both your health professional’s and your own responsibilities when it comes to managing your condition.
Plan for any changes to your lifestyle and home environment
As your chronic condition progresses, your needs may change. With many conditions, you can still lead a relatively independent lifestyle. Planning will help to ensure you receive the care and treatment you prefer now and into the future. You may not currently need extra help or care outside of your routine medical appointments, but your situation will most likely change over time. If you have a degenerative condition, such as dementia, it is in your best interest to prepare for when you are no longer capable of organising your own affairs.
If you are able and you wish to remain at home, you may like to consider the following:
Home-based care – every persons’ situation is different. You might like to consider:
- Organising a home carer (this could be a relative, volunteer or paid carer) to help with self-care tasks, including bathing, going to the toilet or dressing
- Getting help with household chores, such as shopping, cleaning and gardening
- Receiving a meal delivery service if you are unable to cook
- Looking into end-of-life care planning to ensure others know what care and treatment options you want if you are unable to communicate or dying
Home modifications – making changes to your home can allow you to remain independent for longer and prevent injuries. Seek advice from your healthcare providers and consider:
- Installing a stair lift to make your home fully accessible
- Putting an emergency call system in place if you are prone to falling or live alone
- For those in a wheelchair, you may need to widen doorways, relocate light switches, lower a kitchen benchtop or install ramps.
Essential medical treatment – talk to your healthcare practitioners about the best way to receive medical treatment or attend appointments. Telehealth services or home visits may be an option for you. Subsidised transport services are also available for medical appointments. You should also discuss if there is a need for special equipment to manage your condition at home.
Live a healthy lifestyle
Managing long-term conditions becomes part of everyday life. Many people after their diagnosis can live active and fulfilling lives by focusing on the aspects of their life that they can control. This includes your diet and exercise, as well as taking time for your mental wellbeing and self-care.
- Eat well – the food and nutrients you put into your body have a huge impact on your physical and mental wellbeing. Talk to your GP or a dietitian about your diet as certain foods may help alleviate some of your symptoms.
- Let’s get physical – moving your body and staying active in whatever capacity you can is essential. The type of exercise that is best for you will depend on your condition and circumstances, so it’s a good idea to ask your doctor for advice.
- Limit your alcohol consumption – the less alcohol you choose to drink, the lower the risk to your health. Having a long-term condition is certainly a reason to assess your relationship with alcohol and make healthier choices.
- Set concrete, short term goals – goal setting in any aspect of your life, will help instil a sense of certainty, power and control.
- Prioritise ‘me time’ – take time for your mind and relish in the little things you enjoy doing daily. This could be listening to music, reading or meditating.
- Connect with others – continue to develop meaningful connections and maintain your relationships. If your condition affects your energy levels, focus your time and energy on people that add more to your life and support you.
Reach out for support
Don’t be so hard on yourself. You’re allowed to have bad days. Adjusting to any life change is hard and takes time. You may be dealing with the physical pain and discomfort, adapting your lifestyle to your new limitations, managing increased financial pressures and coping with feelings of confusion, frustration and isolation.
Many people with chronic pain and health conditions also experience symptoms of depression. For some, depression may have been a pre-existing condition that has been exacerbated by the pain and diagnosis of their chronic condition. For others, it can be brought about by the pain, stress and emotions that may come along with a chronic condition.
Talking to someone you trust, like a friend or relative, about how you’re feeling is crucial. Whilst it can be difficult, helping others to understand your condition and how it makes you feel can alleviate feelings of hopelessness and sadness that you may be experiencing. Speaking to your doctor is one of the best things you can do for your mental health as they can help you and refer you to support services that best suit your needs. There are also many excellent support services available, including:
- Beyond Blue – provides support to help all Australians achieve their best possible mental health – call 1300 224 636
- Contacting a social worker who can provide short term counselling and information about government and community support services
- Joining a support group or online forum to chat with people who have the same chronic condition as you may also boost your health
- MindSpot Pain Course – this pain course is an internet-delivered pain management program for adults aged 18 years and over
- Head to Health – can help you find the right Australian digital mental health and wellbeing resources, for yourself or for someone you care about
- Lifeline – for any Australian experiencing a personal crisis – call 13 11 14 or chat online.
How others can support someone with chronic conditions
Helping someone else to adjust and live with the demands of their condition and the treatment used to manage their health can be difficult. Whether you are the relative, friend or carer of someone with a chronic condition, the following advice may help you not only care for this person, but also support yourself.
Open communication is key
Organising a family meeting or regular check-ins are a great way to share information and concerns with everyone involved in the care of a person. Meetings can include others outside of the family, including health professionals or friends. You could have a family meeting to make decisions, share news, get support or whenever you think it’s needed.
Ask how you can support them
Every persons’ needs are different, so it’s a good idea to ask the person with the chronic condition how best you can support them. Initially, they may just need your continued emotional support as their trusted relative or friend. Some family members or friends may be able to assist with preparing meals, medication, transport to medical and other appointments. For the more intimate aspects of care, such as administering medications and personal hygiene, you may like to explore organising professional care if that suits them and you better. On the other hand, you might find that being involved in these aspects of their care is important to you both and adds a new dimension to your relationship.
The most important thing to remember is that you should only take on these support roles if you feel comfortable and able to. As time passes and the situation changes, you may no longer be as involved in the care of a person. You should talk this through with your family and ask the person’s doctor for information and support.
Look after yourself
The emotional and physical demands of caring for someone with a chronic or life-limiting condition can be high. As a carer it can be easy to neglect your own needs, but it’s so important to look after yourself, so you are able to care for the person that depends on you. There are many support services that can help you in your role as a family member or carer, including:
- Respite Care – allows you to have a break from caring for a few hours or days or for longer periods, depending on your needs, the needs of the person you care for, your eligibility and the services available in your area. Speak to your GP or healthcare team about accessing short-term relief. You can also check out the Commonwealth Home Support Programme or call 1800 200 422 for more information.
- Carer Gateway – a national online and phone service that provides information and resources to support carers. The interactive service finder helps carers connect to local support services. To find out more call 1800 422 737 (free call, Monday to Friday, 8am to 5pm). For emergency respite you can also call Carer Gateway on the same number 24 hours a day, 7 days a week.
- Carers Queensland – the peak body representing unpaid family and community carers in Queensland.
- If you’re feeling down and overwhelmed, you can contact Lifeline or Beyond Blue.