For many people living with complex chronic illness, life can shrink in ways others do not see. Work can fall away, study can stop, friendships and relationships can become harder to maintain, and even the most basic parts of daily life can begin to feel out of reach.
Based in Tauranga but supporting people right across New Zealand, Complex Chronic Illness Support (CCI Support) helps people hold on to hope when illness has turned everyday life upside down. For many members, that support becomes a lifeline at a time when they feel unseen, unheard and unsure where to turn.
CCI Support is a not-for-profit organisation that supports people living with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, long Covid, dysautonomia and related post-viral illnesses. The organisation provides both practical and emotional support, often filling gaps where the healthcare system is limited. With wraparound care that includes education, advocacy, wellness programmes, counselling, peer support and practical help for both members and their whānau.
“They often don’t feel believed, and can carry a lot of guilt about not being able to do the things others might expect of them, like working or keeping up with everyday life,” says CCI Support CEO Miranda Whitwell. “For many people, it’s not that those around them don’t care but that these conditions can be really hard to understand if you haven’t experienced them yourself.”
“That can leave people feeling quite alone at times and why our role to help build that understanding, while offering a space where people feel validated, heard and supported is so vital.”
She says for many people, every day becomes a careful balancing act. “Imagine if you’ve charged your phone and it looks 100%. With ME/CFS they could wake up and it’s 30%, and they have to decide what to do with that energy, if they eat, shower, have a visitor. Everything is a trade off, and if they go over that limit they can end up in bed for multiple days.”
CCI Support works alongside GPs and hospitals, helping people maintain stability and independence while easing pressure on the health system through timely, community-based support. That role is becoming increasingly important as demand grows and many members present with high and complex needs, including being bedbound or needing home-based care. With limited healthcare pathways for many of these conditions, accessible online and low-energy ways to connect are critical.
“CCI Support has been a lifeline. Before finding them, I felt completely alone and overwhelmed. Now I feel understood, supported, and more in control of my condition,” shared a CCI Support member.
TECT Community Trust Chair, Mark Arundel says this is why the trust is proud to support the organisation.
“Complex Chronic Illness Support is a vital service because it stands beside people who are often facing isolation, uncertainty and a loss of independence,” he says. “We know the difference early, compassionate support can make, not only for the individual, but for their family as well.”
CCI Support is tailored to each person’s situation. Members receive an assessment and can then access one-on-one support, facilitated peer support groups, wellness programmes, workshops and education sessions, care Kete, meal support, volunteer wellness checks, and help with advocacy. Support is also available for whānau, carers, schools and health professionals.
The need is significant with CCI Support having previously had to close off their referrals for periods, with dozens of people waiting for help. As demand continues to grow, sustainable community funding, such as that from TECT helps CCI Support keep providing practical, low-energy support for people living with these often misunderstood conditions.
Miranda says raising awareness of these conditions, and of the support available, is an important part of helping people earlier.
“Awareness of the conditions we support is really important because knowledge is power. Sometimes just knowing support is out there and available, and reaching out for help, is really important because we are there and we care,” she says. “Doing it alone is so difficult, so reaching out for support can be life-changing.”
Current members highly value the peer connection and validation CCI Support provides, often describing it as life-changing. People in Tauranga and the Western Bay who think this story sounds like them, or whānau who are worried about someone they love, can visit the Complex Chronic Illness Support website at https://ccisupport.org.nz/ to learn more or seek support.
