Living with a chronic disease

Being diagnosed with a chronic illness can be an emotional and challenging time, but your mindset can have an impact on how you cope.

Helen Foster
October 2017

Around 50% of Australians are currently living with a long-term illness like diabetes, cardiovascular disease or arthritis. Everyone reacts to a diagnosis differently, and it may take time to process. While it may be a difficult time for you and your loved ones, these tactics could help you keep a positive mindset.

Be patient

You may struggle at first. Learning you have an illness, particularly a serious one, can create a rollercoaster of emotions you might need to work through. It’s okay to feel scared, frustrated or confused and to speak up to family or your doctor if you’re not coping.

Diseases that are linked to lifestyle factors might lead to feelings of guilt and shame in some people. Other conditions may trigger a sense of loss as grief. You may need to work through a few emotional stages of accepting what’s happening before you can think positively about taking control. Counselling may help and Australia Counselling has a full list of registered counsellors who work with people with chronic illnesses.

Choose your vocabulary

While it’s perfectly normal to feel upset, angry or overwhelmed, try to banish words such as ‘sufferer’ or ‘victim’ from your vocabulary. You have an illness but it’s not who you are, nor does it need to define you as a person.

Reframing your point of view also creates a more positive way of thinking. In one US study of people who’ve lived through cancer, those who described themselves as ‘survivor’ or ‘person who has had cancer’ had better psychological wellbeing, while those who identified as ‘victims’ had poorer wellbeing.

“Letting an illness become part of your identity creates helplessness,” says counsellor Marcia Watts. “See it instead as a challenge to face. That puts you in problem-solving mode and you’ll start looking at the resources you can call upon to help.”

Educate yourself

Being informed can help you cope with what’s coming. “Know what the disease is about, how it’s going to impact your life and what you can do to potentially minimise that using factors like medication, diet or lifestyle,” advises diabetes educator Carolien Koreneff.

However, it’s important to choose your educators carefully. Koreneff points out that when illness is involved, family may suddenly become ‘experts’, friends could try and fix you and not everything you read online is true. “Speak to someone who truly understands the disease,” she advises.

And ask your medical professional if ongoing education is available. A 2014 national survey of Aussies with diabetes found 49% had never been offered structured education about their illness – something that a 2012 study, published in the British Medical Journal, showed benefits in diabetes patients for up to 3 years after diagnosis.

Another important source of advice is support groups where you can meet other people with similar experiences. A 2015 US analysis found people living with HIV who used support groups reported better quality of life and even lived longer.

Adapt to the disease

How long these feelings last differs for everyone and can depend on how your chronic illness progresses. “I spent 6 years telling myself the doctors had no idea what they were talking about and the MRI scan was wrong,” says Lisa Wheeler, who was diagnosed with multiple sclerosis in 2002.

Once Wheeler accepted her condition, she found it easier to adapt her lifestyle to her changing abilities. “It was only when my symptoms worsened enough to impact my mobility that I came to terms with my diagnosis. From that moment on though I decided to never dwell on what I couldn’t do but adapt instead. I was a teacher at the time of my diagnosis, but when I could no longer stand for long periods, I retrained and became a hypnotherapist; when I couldn’t run any more, I joined a Toastmaster speaking group and exercised my brain instead.”

Use strategies that work for you

Wheeler’s attitude reflects the 4 factors that help when living with chronic disease, according to research from The Netherlands Research Institute for Psychology and Health, Utrecht. These are trying to focus on:

• staying as active as reasonably possible 
• focussing on potential positive outcomes
• acknowledging feelings
• doing what you can to manage your condition.

Accept bad days

It’s likely that you’re going to have bad days and when setbacks hit it’s important to realise that’s okay. “People often create a ‘burden of bravery’ where they think they always have to be positive – but it’s okay to feel the weight of what’s happening sometimes,” says Watts, who is currently living with a rare form of cancer.

“Give yourself the same amount of compassion as you would a friend going through the same experience and don’t be afraid to ask others for support.”

Above all though to try stay hopeful for the future. “Yes, there are some things I can’t do now,” says Wheeler. “But there’s still a heap of things I can achieve. And I haven’t tried them all yet.”