The Importance of Support

Good morning – I am Sandra Forsyth.

I wear several hats – I am Vice Chair of WellMe the Wellington and Horowhenua Support Group network looking after those living with ME/CFS or Chronic Fatigue Syndrome as it is more widely known, and Fibromyalgia and related conditions.

We have an open arms policy welcoming those with inflammatory and autoimmune conditions. I also have a formal role with Arthritis New Zealand through their Newly Diagnosed Service providing peer support to those with Sjogrens Syndrome and Fibromyalgia. I am also host of Health Happenings, Coast Access Radio’s monthly health programme. I am a health advocate and writer.

My personal health journey started many decades ago with Endometriosis when in my 30s. It was pre-internet and support or information was impossible to find. I thought it would be easier, when in 2010, while living and working in Dubai I was diagnosed with the potentially fatal blood disorder called Myelodysplastic Syndrome but it wasn’t that much easier. A year later back home supposedly to die (I am still waiting), I was diagnosed with Sjogrens Syndrome. As you know autoimmune diseases hunt in packs and being friendly, they love company – so I have a various assortment – add-ons or accessories as I like to call them. A girl can never have enough accessories. However, I in mind shoes and handbags not health conditions. I now have added multiple medical specialists to my list of must have accessories.

Whenever I field inquiries on WellMe’s 0800 number, or talk to someone through the Newly Diagnosed Service – in fact no matter what hat I am wearing, I am always struck by the shared commentary. A shared commentary of being unwell, of emotional bewilderment and anguish, of being in a dark devastating place and not knowing where to turn for help and of reaching out for that help to find there isn’t any. Those calls often last for over an hour as they recount their story – an hour of constant outpouring of grief and loss.

For most of us with a chronic illness there are years of being unwell and undiagnosed – anywhere from 2 to 5 years – or 7 years if you hit the jackpot. Years of frustration as we describe our diverse range of symptoms knowing they are way beyond our doctor’s training and experience. Years of lying on a bed in A&E staring up at the 12-year-old masquerading as a doctor, praying for the dots to be connected – for a diagnosis, for validation, for something – for anything.

Throughout this time, we slosh about in the public health system earning our frequent flyer points. It is a time of bewilderment and mental anguish. Being diagnosed comes as a profound relief after years of sloshing about waiting to meet that 12-year-old masquerading as a doctor who does actually connect the dots. This is the perverse landscape we inhabit – this is our journey, our shared story.

With chronic illness comes grief, as we adjust over and over to our ever-evolving physicality and selves. Grief is a profound aspect of our health journey and a natural reaction to loss and trauma. No one is immune from it – no one escapes it – there is no right or wrong way– no one size fits all. Our grief never goes away, it is never static as we constantly recalibrate our sense of self to fit our changing physicality and circumstances.

And grieve we do – for our former lives, our former selves, our careers, our financial robustness, our relationships, our abilities and talents, all we held dear and what we thought defined us. It is something we live with – our constant companion. At times, it can be a joy thief and so numbing we become less diligent about our self-care. It is yet another invisible component of chronic illness.

For us, being ill is like being parachuted into a strange country over night. We awaken in a new country, to a new landscape, without a map and not knowing the language. I call this process the Journey through the Land of Rejection.

You will travel through the land of rejection and you will find your home, but it won’t be where you left it [Anon]

Against this background, we have an overpowering need for support and to talk to someone like ourselves – to find the others – the others like us we know instinctively are out there.

Perversely and sadly, for most of us, at this time we find our friends, family, our social and emotional networks unable to cope with this new you, withdrawing their support and presence. When we need our support networks most, they dissipate leaving us isolated and vulnerable. We may also become withdrawn and isolate ourselves as we process the profound changes we are experiencing. This can be a lonely and disempowering place to be and we have all been there.

Lack of social interaction undermines our physical health, psychosocial wellbeing and distorts our social identity and sense of self-worth. Studies show that social isolation represses our immune system and can be just as life threating as obesity and smoking. Our emotional, social and mental health also impacts profoundly on our physical health with ongoing support equally important for both the carer and the person who is ill. (Cancer related research shows that 25% of cancer patients spousal relationships do not survive and two major outcomes of that disease are depression from post-traumatic stress and financial devastation. I would suggest these statistics apply equally to chronic illness).

Each of us walks our own unique health journey through our own land of rejection. It is not healthy for us to walk this journey alone. Support is vital. Support is all. It is crucial we keep reaching, finding, supporting and being supported by our others.

Humans are hard-wired for social contact, social connection and a sense of belonging. We need each other to keep our sense of social connectivity, to ground our thoughts and emotions in a social context, to bolster our self-esteem and to belong to something that recognises and supports our own unique selves and anchors us. Scleroderma NZ and its networks like WellMe provide that place of belonging – that anchor. We are all whanau and belong to a tribe, an iwi, a special club with a truly international membership. Welcome to Club Knackered – no one is excluded and you can have membership (ready or not). We have T-shirts for sale at the door on the way out – a steal at $10 each – they come with complimentary adds on of your choice – we offer Reynauds, Neuropathy, Sjogrens, Lupus, dodgy organs, dried out this or that – they are all free today! Hurry up and beat those doctors – you know how fast on their feet 12 year olds can be!

International studies prove that support from those around them enables people with all types of illness to cope with the psychosocial challenges of their condition and improve their outcomes. Speaking and being with people who share our diagnosis, who understand, who get it, who have empathy and both know the language of the illness and have a map to this new land is a crucial an important part of our journey. Hearing stories of their journey, what strategies they use to cope and what symptom management techniques keep them well, both educates and empowers us.

As knowledge of the illness empowers our mind – support empowers our emotional wellbeing. It is said the mind rules the body and when our emotions are down and we feel depressed our body will react. The physical manifestations are very real – increased fatigue, increased pain, symptom flares. Support in all its forms is a powerful antidote to this.

The benefits of participating in support groups are well documented and include feeling less alone and isolated, validation, mutual understanding and support, access to shared wisdom and knowledge, a sense of empowerment and control, enhanced self-management techniques, neutral ears (my term for talking about your fears and concerns to someone outside your inner circle and family) and above all else a sense of community and a sense of belonging. Being part of a support group gives us a purpose – that of giving and receiving support. Within WellMe’s support groups, our various members use their former professional skillset to help others including advocacy with WINZ or medical appointments.

Our Support Groups also have an informal buddy system which I instigated several years following the sudden death of two of our members – one from suicide and one from a medical emergency. The buddy system came into its own last year during the November earthquakes and again in December when two of Levin Support Group members died of medical emergencies. The buddy system encourages members to check in with each other outside of the formal meetings and to flag any concerns with the Community Support Coordinators who can escalate the support provided to ensure no one is left isolated or alone on our watch. This system has proved successful time and time again. We use an open email system to facilitate this, it is part of our culture and who we are.

Mortality issues are a fact of life with chronic illness and it is important this subject is addressed and discussions encouraged both within the Support Group structure and, where necessary, advice and support sought from independent qualified health professionals. It is sometimes helpful to have neutral ears to discuss topics our nearest and dearest may find painful or confronting. We may also feel the need to ‘protect’ our loved ones from these conversations which can be very different to your conversations with them on this topic.

Support groups have their own life force with members being at different stages of coping, acceptance or severity of condition. Those who are further along can help those who are just starting out. This sharing of knowledge and support is often a powerful process.

I personally have found support essential in helping me integrate my condition into who I am. We each have something valuable to contribute, wisdom to convey on and something profound to express in our own unique voice. This is the power of support – we can’t cure ourselves – that is beyond our control. We can however make informed choices, take control of our emotional wellbeing, be diligent about our overall health, actively participate in our health care, learn the language to enable conversations with our medical team as equal partners, access support and protect and retain our social connectivity and sense of purpose.

We may live with chronic illness but we still have a life and belong to something bigger than ourselves. We can be there for others and share the wisdom we have learnt on our journey, we can be an active member of Club Knackered and be a health advocate. We bring with us into this new life all the parts of our old life. We are still the people we were before we became ill and more. We are not instead of our old selves – we are as well as our old selves – the new improved version. We do have a life – we have a best life.

I leave you with this quote from Maya Angelou:

My mission in life is not merely to survive, but to thrive, and to do so with some passion, some compassion, some humour and some style’.