Living with a persistent health issue can be difficult. Managing symptoms, undergoing treatment, and keeping up a positive spirit can sometimes be quite daunting.
Yet, resilience and determination can guide those with chronic health problems towards a more balanced and gratifying life.
In this guide, we will discuss chronic illnesses and emphasise the importance of resilience. This can empower you or your loved one to tackle the daily challenges of living with a chronic condition.
What is a chronic illness?
Chronic illness refers to medical conditions that persist over an extended period, typically for a lifetime. Unlike acute illnesses, which are short-term and have a definite cause, chronic conditions often involve uncertain causes and slow progression.
Diagnosing chronic illnesses can sometimes be challenging, and the tests conducted may offer limited answers, making it critical for individuals to actively partner with health professionals in their daily management.
Biopsychosocial approach to chronic illness
When it comes to chronic illness, adopting a biopsychosocial approach and considering the interplay of biological, psychological, and social factors are foremost.
Chronic diseases often bring about fatigue, pain, functional limitations, and a reduced ability to spend time with friends.
These factors can contribute to the development of psychological challenges such as depression, stress, anxiety, and poor sleep.
It is also important to note that psychological factors can impact the course of chronic disease. For instance, symptoms of depression can make it more challenging to actively manage your chronic condition.
Managing rare disease
Managing a rare disorder can involve tasks similar to those associated with common chronic diseases. However, rare diseases often come with additional complexities.
In addition to self-management, individuals with rare diseases may also need to act as care coordinators, researchers, and advocates.
That is precisely why we list down some strategies below to help you manage a rare disease.
Building resilience
Resilience is the ability to respond and grow after facing adversity and stress.
Resilience isn’t about always being cheerful; rather, it’s about how you respond and persevere through adversity.
Particularly with chronic conditions, resilience can become an integral part of your daily routine, helping you manage stressors and challenges.
Here are three main elements to foster resilience:
- Commitment: Stick to your chosen course of action and try to follow through, even when faced with setbacks. Remember, it’s about the journey, not just the destination.
- Control: We all seek control in our lives. While the outcome may not always be in our hands, we can control our reactions to it. Believe in your abilities to increase your feelings of control.
- Challenge: Reframe stressful situations as challenges, not insurmountable problems. Every challenge can be an opportunity for growth and learning.
Taking care of your basic needs
Attending to your basic needs, such as sleep, diet, movement, and managing substance use, forms the foundation for building resilience.
It is key to recognise that not every tool or approach will be effective for everyone. What truly matters is finding the strategies and practices that work best for you.
The “Baseline”
- Sleep: Aim for 7-9 hours of quality sleep each night.
- Eating: Ensure you have regular, balanced meals.
- Movement: Engage in enjoyable physical activity around three times per week.
- Substance Use: Assess how substances, like alcohol, may be affecting your mood.
By prioritising these basic needs and customising them to your individual preferences and circumstances, you can establish a solid base for resilience. This allows you to effectively cope with life’s challenges, manage stress, and maintain overall well-being.
Embracing Cognitive Behavioural Therapy (CBT)
Cognitive Behavioural Therapy (CBT) offers a beneficial framework for managing thoughts, emotions, and behaviours.
This therapeutic approach proposes that these three factors are interconnected, and altering one can influence the others. Therefore, by changing our thoughts and actions, we can improve our emotional state and enhance resilience.
- Thought: What we think affects how we act and feel.
- Emotion: What we feel affects how we think and do.
- Behaviour: What we do affects how we think and feel.
Instead of this pattern: Feel better → Motivation → Make a change; we follow this instead: What we need: Make a change → Motivation → Feel better.
Note: Follow the plan, not the mood
Incorporating behavioural activation
Behavioural activation involves engaging in activities that bring a sense of achievement or enjoyment.
Rather than waiting to feel better, it requires taking action, finding motivation, and then experiencing an improvement in mood. Remember the mantra: “Follow the plan, not the mood.”
Here are some key points to consider when implementing behavioural activation:
- Focus on doing more of the activities that bring you joy and a sense of well-being while reducing those that have a negative impact on your mood.
- Engage in mastery activities that provide a sense of accomplishment, such as cleaning the house, organising, or handling financial responsibilities.
- Incorporate activities that bring you pleasure, such as speaking with friends or engaging in hobbies like reading.
- Create an activity schedule that includes physical movement, such as going for a walk, stretching, or participating in virtual gym classes.
- Remember to allocate time for self-care and prioritise activities that nourish your mind, body, and soul.
Understanding your values
Your values can be instrumental in improving your mental well-being during periods of low mood or heightened anxiety. Use your values as a roadmap for how you spend your time and resources. This approach can give you a greater sense of control and resilience.
Rate each domain for how important it is to you from 0-10:
- Physical/Mental Wellbeing
- Citizenship/Community
- Spirituality
- Recreation/Leisure
- Family Relations
- Education/Training/Personal Growth
- Marriage/Couple/Intimate Relations
- Parenting/Caregiving
- Friendships/Social Relationships
- Productivity
Rate each domain for how satisfied you are from 0-10:
- Physical/Mental Wellbeing
- Citizenship/Community
- Spirituality
- Recreation/Leisure
- Family Relations
- Education/Training/Personal Growth
- Marriage/Couple/Intimate Relations
- Parenting/Caregiving
- Friendships/Social Relationships
- Productivity
Setting SMART goals
Setting goals that are Specific, Measurable, Achievable, Relevant, and Time-based (SMART) can provide a clear sense of direction and prevent aimlessness. However, it’s important to maintain flexibility and adapt plans to unexpected changes in life.
For example: Engage in outdoor walking for 10-20 minutes, two days per week, starting Sunday, 2 April 2023.
By making the goal specific (engaging in outdoor walking), measurable (10-20 minutes), achievable (two days per week), relevant (for Scleroderma patients or caregivers), and time-based (starting Sunday, 2 April 2023), you have a clear target to work towards.
Overcoming unhelpful thinking styles
Developing self-awareness is essential for recognising and managing unhelpful thinking patterns, such as all-or-nothing thinking, labelling, and unrealistic expectations.
By acknowledging the impact of our thoughts on our emotions, we can become more aware of unhelpful thinking patterns. This awareness allows us to challenge and replace negative thoughts with more realistic and supportive ones.
Instead of being trapped in all-or-nothing thinking or labelling ourselves, we can adopt a mindset of self-compassion and recognise our efforts and strengths, even in the face of difficulties.
It is normal to struggle at times, and focusing on our strengths and doing our best can help us overcome unhelpful thinking styles and cultivate a more positive mindset.
You can start by replacing guilt-inducing “should” statements with kinder “could” statements for more compassionate self-talk.
You may also try filling in this sentence: “Although I may be facing challenges today, I am doing my best and possess the strength of [Insert relevant strength].
By acknowledging your strength, you can actively challenge and reframe any unhelpful thinking patterns that may arise.
Practising self-compassion
Practising self-compassion is essential for fostering resilience. It involves being kind to yourself and recognising that everyone faces struggles. By treating yourself with the same kindness you would offer to others, you can cultivate self-compassion as a powerful tool in your resilience arsenal.
Here are some ways to practice self-compassion:
- Connecting with Support Groups. Support groups are group meetings where individuals facing similar disease-related challenges come together to create a social network. These groups can provide encouragement and support to one another. In Australia alone, there are more than 100 support groups available for people living with scleroderma.
- Connecting with the Scleroderma Patient-Centered Intervention Network (SPIN). SPIN is a global cohort of individuals with scleroderma who participate in online studies. They are recruited by rheumatologists and other scleroderma healthcare providers from over 45 clinical sites in 7 countries. SPIN provides a platform for individuals to engage in research and access valuable resources related to scleroderma.
- Checking out self-help resources: There are also various self-help resources available to support individuals with scleroderma and their caregivers. An example includes “Supporting a Loved One with Scleroderma: A Handbook” by Danielle Rice.
Wrapping Up
Remember, you are never alone in this journey.
By embracing resilience, connecting with supportive individuals, and utilising the resources available to you, you can navigate the challenges ahead with strength and determination.
We invite you to actively participate in our upcoming Virtual Education Sessions and other events. These sessions provide valuable knowledge and insights that can empower you to overcome obstacles and achieve your goals.
Alternatively, if you’re in a position to contribute, we greatly appreciate any donations that can support our mission and allow us to continue offering these beneficial programs to others. To donate, go here.