Living with Chronic Illness

As a Coach, I am privileged to spend time with a range of clients, working with them to move forward and achieve their goals. As with everything worthwhile, achievement requires patience, persistence and perseverance. Even more so when life throws you a curve ball such as Chronic Illness.

Living with Chronic Illness - either as a sufferer or a career - requires navigating daily life with patience, resilience and practical strategies. This isn't easy as we juggle family, work, and medical commitments. There are some things that can help to manage the everyday challenges of chronic illness. The most important thing is that you find what works for you.

For the Person living with Chronic Illness:

Developing a Routine

Managing your energy: Use the 'spoon theory' (sometimes called bucket or battery) to plan your day. Determine the important tasks which need to be completed and spread them out to avoid burnout.

Daily structure: Build a flexible yet consistent routine to reduce unpredictability and stress which also allows you to make changes as you need to.

Manage Health

Medication and Treatment: Different conditions require different levels of medications and treatments. It's important to ensure that you are oraganised. This can be done through using pill organisers (I like the multicoloured ones) and alarms to track medication is taken when required and appointments attended. It also helps avoid the downside of forgetting to take your medication - eg mood swings, nausea, pain spikes.

Monitor symptoms: Using a journal or diary can help keep track of changes, triggers or flares. This in turn can help to determine efficacy of treatment and medication.

Emotional Well-being

Allow emotions: Chronic illness can cause a range of emotions, including grief, frustration, sadness, and anger. Acknowledge these feelings without judgement. They are part of your journey.

Seek support: Join on-line or in-person support groups. Talk to a therapist, a coach, or engage with others who understand your condition. Sometimes we need to share our experiences to be able to move forward.

Communication

Be honest: Communicate clearly about your needs and boundaries. By sharing your limits with loved ones and healthcare providers you can determine a routine and way forward that works for you.

Educate others: Help others around you understand your illness - especially when it's invisible. People are more willing to be there for you when they understand at least a little of what's going on in your world.

Self-Compassion and Adaptability

Be kind to yourself: There are days when you achieve everything on your 'to do' list, and many that you find yourself being 'unproductive'. That's okay. Your value isn't based on output. Give yourself permission to ret and recover when you need to.

Celebrate small wins: Sometimes just getting out of bed and dressed is a major achievement. And that's okay. Even minor accomplishments matter. One day at a time.

For the Carer or Support Person

Understand the Illness

Educate yourself:  Learn about the condition and it's impact on the person's daily life to foster empathy and provide appropriate support. This may mean learning new routines or picking up extra tasks, embracing new technology or facing the unknown with courage.

Stay informed: Chronic illnesses can evolve, and change depending on internal or eternal circumstance. Continuous learning will keep you informed and help reduce any additional stress.

Support without Overstepping

Ask, don’t assume: Offer help, but let the person guide you with what they need. Sometimes this isn't easy, so be patient and check in regularly.

Promote autonomy: Depending on the illness, some people will want you to do everything, while others will refuse offers of help. Find the healthy balance that works for you both, while encouraging independence where possible, even if it takes longer.

Emotional Support

Active Listening: Sometimes, being present is more valuable than offering solutions. The ability to sit and listen without judgement can help another to sort through their emotions and find a path which works for them. And you.

Avoid toxic positivity: Life with chronic illness can be hard. Really hard. Acknowledge the hardship rather than dismissing it with forced optimism which is disingenuous and unhealthy for you both.

Manage your own Well-being

Set boundaries: We all want to do as much as we can for those we love, however it is important to look after yourself as well. Caregiving should not consume your identity. Ensure you take appropriate breaks, and protect your emotional and metal space.

Seek support: Being a fulltime carer can be lonely and feel endless. Consider joining carer support groups or seeing a counsellor or coach to talk through some of the issues you may be facing. You don’t have to do it alone.

Teamwork

Coordinate together: Take advantage of technology to share calendar appointments for medical appointments, outings, routines, and medications; as well as links to appropriate sites or support groups.

Celebrate together: Acknowledge progress or milestones as a partnership and as a team. This may be a celebratory coffee, a walk in the park, an outing to the art gallery. Decide together and raise  glass to each milestone big and small.

Living with and Caring for Chronic Illness is an ongoing journey that takes multiple people and is never a straight line. It can be lonely, frustrating, and disheartening. It can also be incredibly rewarding. Everyone's journey is different. But. It doesn’t have to be done alone. There's a team of people from friends and family to counsellors and coaches who are there to support you.

For more comprehensive information and resources, consider visiting the following websites:

• Healthdirect Australia: A national, government-owned, not-for-profit organization providing health information. Trusted Health Advice

• Better Health Channel: Offers health and medical information to help individuals and their families stay healthy. Health and Aged Care Department

• CreakyJoints Australia: Provides education, support, advocacy, and research for people living with arthritis and other chronic conditions. CreakyJoints Australia

• Carer Gateway: Offers free services and support for carers across Australia. Carer Gateway

• Carers Australia: The national peak body representing carers. Trusted Health Advice

• Support for Carers Program (Victoria): Provides tailored support for carers in Victoria. VicGov Connect