1 Lafayette, R., Sidhu, R., Proudfoot, C. et al. (2024). Quality of life and fatigue burden in individuals living with Complement 3 Glomerulopathy – a real-world study. Nephrology Dialysis Transplantation, 39(Supplement 1), gfae069–1313–2632.
2 Rog J, Nowak K, Wingralek, Z. (2024). The Relationship between Psychological Stress and Anthropometric, Biological Outcomes: A Systematic Review. Medicina, 60(8), 1253.
Quality of Life and Looking to the Future
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Living with a rare kidney condition such as Complement 3 Glomerulopathy (C3G) or primary Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN) can bring challenges that go beyond medical appointments. It can influence your energy, emotions, routines and how you think about the future.
Taking time to think about what helps you feel well and what matters most to you, can help to support your quality of life. This article shares practical strategies that other people living with C3G or primary IC-MPGN have found helpful, while recognising that your experience and needs are unique. The guidance below is here to support you, use and adapt the information in a way that feels right for you and your wellbeing.
2026-02-12
NP-47451
Finding Your Daily Rhythm
Finding the right balance between caring for your health and getting on with everyday life can take time. Gentle routines can help create structure, while flexibility allows you to respond to how you’re feeling on any given day.
Fatigue is one of the most common challenges experienced by people living with long-term kidney conditions.1 Many people find that their energy levels vary throughout the day, rather than feeling consistently “tired” or “energised.” Learning to listen to your body and adjust plans when needed can help protect your wellbeing.
You might find it helpful to:
- Tackle more demanding tasks at a time of day when your energy is higher
- Taking short breaks when needed
- Be kind to yourself on lower-energy days
Simple routines can also bring a sense of stability. Some people find comfort in gentle structure, such as waking up and going to bed at similar times each day, preparing meals in advance, and breaking household tasks into smaller, more manageable steps. These small habits can reduce the pressure of constant decision-making and make everyday life feel more manageable.
Over time, many people find a rhythm that works for them - balancing work, family life, hobbies, and healthcare appointments. Letting friends, family or colleagues know that you may need flexibility on some days can also help build understanding and support.
Staying Connected
Making space for activities you enjoy, whether creative, social, or physical, can support your emotional wellbeing and help you maintain a sense of identity beyond your diagnosis.
Social connection is another important part of living well. Many people living with C3G or primary IC-MPGN find comfort in speaking with others who understand what it is like to live with a rare kidney condition. Online support groups, patient-led programmes, and rare kidney disease networks can offer reassurance, shared experience and practical advice.
Caring for Your Emotional Wellbeing
Your emotional wellbeing is just as important as your physical health. Living with a chronic condition can sometimes bring a mix of emotions like worry, frustration or uncertainty. Noticing and acknowledging these feelings is a meaningful first step.
Stress can also affect how you feel physically,2 so finding gentle ways to ease it may help support your overall wellbeing. Some people find emotional comfort in the following self-care activities:
- Breathing exercises
- Mindfulness or mediation
- Journalling
- Gentle movement
- Spending time in nature
Others prefer activities that occupy the mind, such as:
- Reading
- Listening to music
- Completing puzzles or games
There is no “right” way to cope – exploring different approaches can help you discover what feels calming, grounding, or restorative for you.
Talking openly about how you’re feeling can also help. Sharing with a trusted friend, family member or someone on your care team may ease the load. If worries or low mood begin to affect sleep,concentration or daily life, support from a mental health professional can be a helpful option.
If you would like more information, you can also explore the article on emotional and mental wellbeing here.
Looking Ahead
Living with C3G or primary IC-MPGN can bring uncertainty, and it is natural to think about what the future might hold. At the same time, many people find ways to build fulfilling lives shaped by their values, relationships and interests.
Having the right support around you – from healthcare professionals, loved ones, peers, and patient organisations – can make a difference. With guidance and support, it is possible to protect and nurture your quality of life.
Over time, many people discover their own way of balancing living in the moment and feeling hopeful about what’s ahead. Some find comfort in planning, others in staying flexible, and many in having open and honest conversations with the people around them. There is no single “right” approach - take the time to find what works best for you.
Honouring Meaningful Moments
Quality of life isn’t only about big milestones. It’s often shaped by small, meaningful moments - like attending an appointment you were nervous about, finding a new coping strategy, completing a creative project, or simply having a day that felt a little easier.
Noticing these moments can build confidence and remind you that you’re moving forward, even when things feel challenging.
Why not start today by taking a moment to reflect on something you are proud of or grateful for?
Further Resources
These organisations may offer additional guidance, community connections, and practical support:
- Compcure.org: Advocacy, community events, and rare complement-mediated kidney disease information.
- Nephcure.org: Education, research updates, and patient support resources.
- Worldkidneyday.org: Global kidney health awareness, stories, and wellbeing tools.
- Local and regional kidney charities, rare disease organisations and patient groups, often host peer meet-ups, webinars, helplines or online forums.