Looking After Mental Wellbeing

Mental health and emotional wellbeing are deeply connected to how we live with CF, and they often shift in new ways as our physical health and treatments improve. While modulators can ease the physical load, they don’t automatically make life feel “easier”. For many people, new challenges appear once survival is no longer the main focus, from rethinking identity and purpose to managing emotions that were previously pushed aside.

While physical health is significantly improving with modulators, the impact on mental health may be more subtle. Many people with CF experience improved wellbeing, yet others experience persistent or emerging emotional challenges, particularly around anxiety, identity shifts, and finding purpose. You can read more about the psychosocial support we provide here.

I think it’s important that we recognise that while there’s lots of positive things happening, that for people where there’s been a big change and adjustment, we actually provide that support to make sure they can maximise this opportunity. I still think there are psychosocial challenges that people are facing, despite the improvements in physical health outcomes.

– CF Health Professional

Emotional Shifts

While modulators can improve mood and reduce anxiety for some people, they may also be associated with new or unexpected emotional challenges. For some, these changes relate to adjustments in life circumstances, identity, and expectations as health improves. For others, emotional shifts may be influenced by the direct or neurological effects of medication, side effects, or changes in the body’s chemistry. Often, it can be a combination of both.

Adjusting to better health can bring relief, but it can also lead to complex or mixed emotions, including guilt, pressure, or uncertainty about the future.

You might notice:

Relief and grief – feeling thankful for better health, while also grieving the years or opportunities CF has taken from you.
Survivor’s guilt – Wondering “why me?” when others you know are still unwell or have passed away.
Loss of identity – If CF was a big part of how you saw yourself, it can feel strange or destabilising to no longer be “the sick one” (for more info, see here).
Anxiety about the future – Even with better health, fear of decline or uncertainty can make it hard to feel relaxed or optimistic.
Health perfectionism – Feeling pressure to be productive or happy now that you’re well, even when you’re tired or mentally struggling.
Unmet expectations – When modulators don’t work as expected or side effects mean you can no longer take them.

What Can Help

Acknowledge emotional complexity – It’s okay to feel conflicting emotions. There’s no right way to feel after your health changes.
Talk to someone you trust – Whether it’s a friend, partner, psychologist, or CF social worker, sharing how you feel can bring relief and clarity.
Normalise mental health care – Your mind is part of your body and deserves care too. Seeking support can be a proactive, strength-based way to adapt to change and build resilience, not a last resort.
Use grounding tools – Techniques like journalling, breathing exercises, and gentle routines can help you manage overwhelming or spiralling
Connect with others in the CF community who understand how you feel (including events and online connect groups)
Read stories from other members of the community here who may have similar experiences.

Tip: Improved physical health doesn’t erase the mental load of living with CF, and you deserve the same care and attention for your emotional wellbeing.

Useful Apps for Mental Health:

Head Space: Mindfulness and meditation app, that helps create lifechanging habits to support your mental health and find a healthier, happier you (free content available, with optional paid features).
Smiling Mind: Empowers you to live mindfully, embrace flexible thinking, grow connections, act purposefully and recharge your body (completely free).

Read more on mental health treatment plans and available rebates here.