The National Aspergillosis Centre hosts several social contact meetings each week intended for anyone (not just NAC patients) to attend and find support from fellow patients, carers and NAC (non-medical) staff.
We talk about many things and muse on many subjects, often circling back to common themes and patient wellbeing is one such theme. We speak from a variety of experiences and knowledge, but no-one is a medical professional consequently this is not medical advice – this comes from the thoughts of fellow patients with a few internet resources we think are helpful.
A recent discussion started with the heartfelt request ‘How do I learn to live with and accept a chronic illness with all its frustrations and limitations?’. We were asked to reproduce our responses here:
Learning to accept a chronic illness can be a challenging and deeply personal journey. Chronic conditions like ABPA often bring lifestyle changes, physical limitations, and emotional challenges, and acceptance is a process that takes time. Here are some strategies to help you work towards acceptance and find ways to live well with chronic illness:
1. Educate Yourself About Your Condition Understanding your illness can reduce fear and help you feel more empowered. Learn about your symptoms, treatments, and ways to manage the condition. Knowledge can give you a sense of control and help you make informed decisions. Connect with reputable sources, support groups, or healthcare professionals who can provide clear information and support.
2. Acknowledge Your Emotions It’s natural to feel grief, anger, sadness, or even denial after being diagnosed with a chronic illness. Allow yourself to feel and process these emotions without judgment. Writing in a journal or talking to a trusted friend or therapist can help you work through complex feelings. Acceptance doesn’t mean forcing yourself to feel “positive” all the time. Instead, it means letting yourself feel what you feel and then choosing how to respond.
3. Adjust Your Expectations. Chronic illness often requires lifestyle adjustments, so it’s helpful to adapt your expectations. You may need to modify goals or explore new ways to enjoy activities you love. Find ways to redefine what “success” and “achievement” look like for you now. Embrace pacing techniques, such as breaking tasks into smaller steps and prioritizing activities that are meaningful to you.
4. Focus on What You Can Control Chronic illness can make you feel powerless, but there are things you can control, like your daily routines, stress management techniques, and how you take care of yourself. Establishing small, achievable goals—like staying active within your limits, eating nourishing foods, or practising mindfulness—can give you a sense of purpose and accomplishment.
5. Practice Self-Compassion Be gentle with yourself. Managing a chronic illness is hard work, and you deserve kindness and patience. Acknowledge that you’re doing the best you can with the circumstances you’re facing. If you feel frustrated or disappointed, try to talk to yourself as you would a friend, offering encouragement rather than criticism.
6. Develop Coping Strategies Find coping techniques that work for you, whether it’s mindfulness meditation, deep breathing exercises, or engaging in creative outlets like art, music, or writing. Relaxation techniques can help you manage stress and increase resilience, making it easier to cope with the unpredictability of chronic illness.
7. Cultivate Supportive Relationships Connect with people who understand and support you. This can be friends, family, support groups, or online communities. Sharing your experiences and feelings can help you feel less isolated and understood. If you’re open to it, joining a support group for people with chronic illness can offer valuable insights, encouragement, and a sense of community.
8. Seek Professional Support Working with a therapist who specializes in chronic illness can provide tools and strategies for coping. Cognitive Behavioral Therapy (CBT), for example, can help reframe negative thoughts and build resilience. Some people find benefit in seeing a counsellor or psychologist to work through the emotional aspects of chronic illness, such as grief, anxiety, or depression.
9. Find Meaning and Purpose Chronic illness can lead to a reevaluation of what’s truly important to you. This can open the door to new interests, priorities, and ways of finding fulfilment. You might choose to focus more on relationships, hobbies, or ways of giving back. Finding purpose, even if it’s in a different form than before, can bring a sense of joy and satisfaction. Some people find purpose in helping others with similar conditions, advocacy, or creative pursuits.
10. Embrace Flexibility and Adaptation Chronic illness often requires flexibility and the ability to adapt to changing energy levels and symptoms. Practising mindfulness can help you stay in the present moment and accept where you are right now, even if it’s different from where you thought you would be. Accept that some days may be harder than others. Remind yourself that it’s okay to rest, adapt, and take things one step at a time.
11. Celebrate Small Wins Recognize and celebrate your efforts, no matter how small they may seem. Every step you take toward self-care and acceptance is a victory. Acknowledging your progress can reinforce your resilience and encourage you to keep moving forward.
Acceptance doesn’t happen overnight, and it’s normal to experience ups and downs. It’s a journey that involves patience and self-compassion. Over time, you can find ways to live well and experience moments of joy, meaning, and fulfilment—even with a chronic illness.