These are the personal ponderings from the CEO of CCI Support 

As CEO of Complex Chronic Illness Support, I am often asked about our tagline “Empowering People Towards Wellness”.  Depending on who you are and how you’ve got to where you are, as well as your understanding of the conditions that CCIS support, you may have your own understanding of what that tagline may mean.

I want to break down what it means to me, as the person in the management role of the organisation.

Empowering – When people come to CCI Support, they could be accessing it from a referral from their Health Professional. Someone who recognises the symptomology and realises that with their limited resources, the support they can provide that person is limited.  Or they could be accessing our services directly, after years of tests that provide no diagnosis, just being used to rule things out. They could be in a situation that they recognise their body isn’t functioning ‘well’ and at the end of their rope of how to ‘fix’ themselves, because they want their ‘life’ back. They could have been medically gaslit, and told ‘it’s all in your head, a psychological condition’. But for almost all of the people who come to us… they have been disempowered. They no longer have control over their bodies, they didn’t ask to be unwell, their health is not only affecting them but their homes, relationships, financial situation and so much more.  For the most part, it’s been after a virus or infection has attacked them, and they never fully recovered – or they did from the initial symptoms, but new symptoms have taken over.

Empowering someone is to “make (someone) stronger and more confident, especially in controlling their life”. Has CCI Support got all the answers? No, we are first to admit that we don’t. There is no ‘magic pill’ and no ‘fix’, but we do give people tools to take control of their symptoms – or at least teach them to manage them better, within their limitations.  That may even mean that they are able to be stronger mentally to deal with what has and is happening ‘to them’.  Sometimes empowering someone is as simple as acknowledging what they are going through.  Giving them validity.  Other times it’s teaching them more skills like pacing, boundaries, nutrition, or an understanding of their condition/s.  Knowledge is power – I learnt that as part of my high school tagline.  We aim to support them by authentically caring for them holistically.  Seeing the ‘bigger picture’.

People – It’s an absolute given that we work with people who present with symptomology of ME/CFS or Fibromyalgia and related conditions and symptoms, but we are not limited by that. A person very rarely is completely isolated. They have someone who has or is walking through life with them, and these illnesses affect them too.   They often are dealing with grief and loss, an unintentional lack of understanding of what the person is going through.  With a little education, support and if necessary, some counselling, they are able to offer more support and understanding to the person afflicted with these conditions.

Towards refers to the journey.  Many people with complex chronic illnesses, such as ME/CFS and Fibromyalgia struggle. They may look well but feel ‘unwell’ or are in constant pain or misunderstood.  There is no ‘cure’ and despite some claiming graded exercise therapy (GET) [1] [3] and Cognitive Behavioural Therapy (CBT) being good treatments, research is very clear that ‘treatments’ such as these are actually more harmful than beneficial.

We work with people to identify what parts of their lives are affected and provide tools and support for them to work on or improve these areas.  We are ‘the guide by the side’ in the journey.  I believe that on your own an Illness can be overwhelming but have a tribe of people who authentically have your best interests at heart, and we can turn the I into We and from the Illness onto a step on the journey towards ‘wellness’. A person doesn’t need to walk the journey alone. There are people that understand, CCI Support understands, people also walking this journey can understand, and with support your loved ones can understand. With a tribe, we can help these conditions become less isolating.

Does this mean the journey will always be a straight line upwards with a state of wellbeing at the end? No such luck, life isn’t like that, and life can be particularly unfair at times. A journey is not the destination.  There will be many crashes and ups and downs, but with the right tools, a person can learn to understand and/or take control over how these crashes affect them and how severe or debilitating they can be.  That’s the goal anyway.

Wellness

Does wellness mean recovered? Not at all.  For people with chronic conditions, such as ME/CFS, there is a wide spectrum of where a person may sit as far as functionality goes.  We know there is no ‘cure’, no ‘quick fix’ or ‘magic pill’. We are completely aware that 25% of people with myalgic encephalo­myelitis (ME), will be classed as severe or very severe.  Meaning being housebound or bedbound at some point in their illness,[2] typically needing to use a wheelchair, unable to do any kind of work or study, and often unable to do basic self-care activities unaided.  For these people on their journey ‘towards wellness’ it may mean their goal is to walk to the gate or even to the front step.  It might be that they can even just shower themselves. CCI Support will provide encouragement for them to reach for a realistic goal that they choose to make for their journey. Empowering them to recognise their limitations and safely make changes that will help them reach their goal.

For others, wellness is an understanding of their bodies, their warning signs, their ability to ‘function’ within the life they have created or want to create for themselves.

CCI Support does not see wellness as a destination… it’s increasingly improving and reaching the realistic goals we choose to make on the journey. With many ups and lots of downs too.

Recently, it was said that CCIS works ‘alternatively’, because how can people with ME/CFS ever be ‘well’?  CCIS Support provide a holistic service, and that means that we look at a person as more than ‘a condition’ or their illness/es. We completely understand that as humans, there are many facets to us.  Our health affects not only our physical health, but our mental health, our relationships with loved ones and friends, our livelihoods, our finances, our homes, our spirituality (whatever that means for you) and in fact every area of this doesn’t work in isolation. This isn’t alternative thinking… within the health industry and my own training as a registered nurse, this was the only thinking.

So, the fact we provide alternative therapies to achieve that couldn’t be further from the truth.  We align our services on evidence-based research. But we are also open to the fact that sometimes what works for someone, will not work for another and sometimes anecdotal evidence can sometimes provide some answers and be acceptable too.  Who are we to disempower someone, by telling them they ‘have to/cannot do’ certain actions in order to reach their ’state of wellness’?   I don’t know about you, but as our bodies age, our idealistic view of ‘wellness’ changes.  For one, it might be being perfectly ‘healthy’ (do you know anyone who is PERFECTLY healthy?) or it might be a deeper understanding that “I am happy with where I am and where my health is”.  We understand that as part of a person’s ‘journey’ is a privilege and with that comes a responsibility to provide the best support we can for people going through something so incredibly difficult.  We aim to support people in ‘their’ individual journey.

Everyone’s journey is unique, I haven’t even met two people going through the same exact symptoms with the same co-morbidities.  Our clients and members certainly have similar stories, but each journey is different. We provide appropriate resources, support and tools to be the ‘guide by the side’ and part of their ‘tribe’, as we want people to live the ‘best life they can’, irrespective of circumstances.

Miranda is a Registered Comprehensive Nurse by training and now the CEO of CCI Support, since 2019.

[1] Vink, M., & Vink-Niese, A. (2018). Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health psychology open, 5(2), 2055102918805187. https://doi.org/10.1177/2055102918805187  Institute of Medicine (U.S.)

[2] Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, D.C. p. 32. ISBN 9780309316903OCLC 906233426.

[3] https://m.e.awareness.nz/statements-from-academics?fbclid=IwAR2tG1esL6oIP_7XcwuYB2NxpSn0SXYbHbAznya9dhYrn-8IdgKrWSIqQp8