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Mental Wellbeing

It is incredibly challenging living with a disabling chronic illness like ME/CFS as it significantly reduces our options and the quality of our life. It is natural that we would grieve the losses and find it difficult to cope with at times, especially if we are very unwell and not receiving much support.

 

​Find and develop strategies that help you cope:

  • Schedule in activities that you enjoy or that help you feel connected to others.

  • Stress will worsen any illness, and ME/CFS is no exception, so look for ways to minimise stressors.

  • Allocate time for friendships with people who understand and care.

  • Explore practices like mindfulness and self-compassion (see Strategies section below).

  • Talk to your doctor about accessing counselling or other mental health services (see section below).

  • Consider coming along to our in-person and online meetings, or joining our Facebook support group, to connect you with people who understand about life with chronic illness. ​​

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We offer some suggestions for accessing counselling and developing strategies below.  

There are a range of mental health helplines and support services available in New Zealand and many of them are free. Give yourself permission to use them if you need to.

 

The Mental Health Foundation of NZ provides a list of support options here. Need to talk? Free call or text 1737 any time for support from a trained counsellor.

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The Health Info website provides information about 'Getting help for a mental health issue' from Health NZ. This describes some of the mental health supports available in the South Island, including those available through your GP. 

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To see a counsellor privately, you may be eligible for financial support to cover the fees from Work and Income, even if you are already receiving a Disability Allowance (see section below). 

Accessing mental wellbeing support

Questions to ask a prospective therapist

It is appropriate to ask a prospective service or therapist some questions before you start working with them, or during the first session.  Consider asking:

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  • Ask what they understand about ME/CFS, or the chronic illnesses you have, to confirm that it matches current international guidance e.g. are they aware of the ME/CFS guidance on Health Info, from NICE (UK) or CDC (USA)? 

  • Are they familiar with the impacts of living with an invisible chronic illness which changes daily life and has no approved treatment?

  • Describe what you are wanting support with and ask them to confirm they have relevant experience and interest in supporting you. 
    You may have identified that you want support with issues, such as stress and uncertainty, adjustment, stigma, hopelessness, sleep problems, relationship challenges, grief and loss, identity, parenting, anxiety, and other mental health problems.

  • Confirm what the funding arrangements are for the therapy. 

  • Confirm that the therapy can be offered in a format that meets the severity of your illness e.g. telehealth, phone, their office, your home, text. 

Wellbeing services through your medical centre

Many General Practice clinics now have Health Improvement Practitioners (HIPs), Health Coaches and Support Workers through the Access and Choice programme. These team members are available to deliver a wide range of mental wellbeing support and tools, without long waits and often on the same day, and the services are free. 


Health Improvement Practitioners (HIPs) are experienced mental health clinicians who work with people of all ages and their whānau. They may have a degree in psychology, psychotherapy, mental health nursing, social work, occupational therapy or be a DAPAANZ registered counsellor. HIPs help people with any issues impacting on their health and wellbeing. Sessions are brief (15-30 minutes), normally in-person, and focus on what is important to you, today. At your first session you will get some strategies and a plan. There are no limits to how often you can see the HIP. 


Talk to your GP or ring your medical centre to find out the best way to get seen by a HIP who has an understanding of ME/CFS and life with chronic illness. 


Other Brief Intervention Talking Therapy (BITT) options are also usually available. Ask your medical centre to refer you for free short-term support with your mental wellbeing. BITT therapists are registered mental health professionals and telehealth options may be available. 

Counselling by telehealth with Pūawaitanga 

If you are wanting to try some talk therapy, you may want to consider the short-term counselling offered via telehealth by Pūawaitanga. It is free for people over 18 who are on a Work & Income benefit or who hold a Community Services Card. If you don’t meet the criteria for free services, you can also pay to access the service.

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The sessions are offered through phone or video call between 9am-9pm, 7 days a week. There is no waitlist and first appointment is usually within five days. The number of sessions is flexible, depending on need. 


Pūawaitanga have confirmed they have counsellors who have experience offering support for long term health concerns, and that this can be requested in the referral. Self-refer through their website www.puawaitanga.nz or call 0800 782 999. Ask to be assigned with one of their trained professionals who is familiar with the impacts and grief of chronic illness. 

Counselling for under 25s with Gumboot Friday

Gumboot Friday provides two free counselling sessions for anyone aged 25 and under who needs the support of a qualified practitioner, including counsellors, psychologists, psychotherapists, and art therapists. You can search their directory and select up to three counsellors who you’d be willing to talk to and then send them a message. Sessions can be face to face, online or by phone.


“Remember, there’s no shame in asking for help – it’s just a conversation.”

Aoake te Rā

Aoake te Rā, also known as the Bereaved by Suicide Service, is a free service that gives 6 to 10 free sessions to support individuals and whānau to navigate life after suicide loss, whether recent or a long time ago.

 

If you have lost someone to suicide, it may be impacting your physical health as well. Experienced therapists can support you to honour the grief and to explore finding a place for it.

Private Counselling and Psychologists

You can find a counsellor through the directory from the New Zealand Association of Counsellors (NZAC). You can search for counsellors in your region and what they specialise in e.g. chronic illness, chronic fatigue syndrome.  Most counsellors can offer telehealth sessions. You may have to pay part or all the cost.


Health Psychologists seek to help people cope with the emotional and psychological impacts of adjusting to living with chronic physical health problems, and to foster hope for the future. Search the NZ Psychological Society directory or use a search engine to find the websites of psychologists.  

Employee Assistance Programmes (EAP)

Some employers offer employee assistance programmes (EAP) to their employees and this may also be available to family members. An EAP is a confidential service that your employer pays for to give employees access to qualified, registered and experienced professionals. An EAP therapist can help you talk through issues affecting your wellbeing.

 

Talk to your manager or human resources representative about whether your employer offers an EAP.

Funding from Work and Income

You may be eligible to apply to have the costs of ongoing mental health support covered by the Disability Allowance (DA) or the Temporary Additional Support (TAS) allowance from Work and Income. You don’t have to be on a benefit to qualify for the DA, but you and your partner cannot earn more than set income limits.  The TAS has both income and asset tests and needs to be applied for every 3 months.

Further Information About Services

  • The Family Services Directory from MSD also lists a range of mental health services. 

  • ​Additional resources from the Mental Health Foundation of NZ include: ​

    • Support for Myself is a list of resources including strategies for recovery. 

    • Accessing Mental Health Services covers finding a GP, community mental health services, how to find a therapist or professional, and finding a therapist privately, and community support groups. 

Developing strategies for mental wellbeing

Reasons for prioritising self-care strategies

Looking after our mental wellbeing often helps our symptoms to stablise and our health to improve. 

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Low mood can sometimes be part of post-exertional malaise (PEM), so if the PEM episodes can be reduced, your mood may improve as your symptoms become more stable. Use our guidance for  Activity Management to pace as well as possible given your circumstances. 


With ME/CFS and Long Covid, our autonomic nervous system might become dysfunctional, or dysregulated. This autonomic system includes our sympathetic nervous system (fight or flight) and parasympathetic nervous system (calm/rest/digest). Your body may have trouble moving into the rest state, which can make your body feel that it is in danger or anxious.


Along with our tips at the top of this page, it can be really helpful using mindfulness, breathing, gentle stretches or relaxation techniques during each day to calm down your nervous system.

Self-directed Online Courses and Resources

There are many courses and online resources that you can explore at your own pace.

 

A selection of courses...

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Other resources...

Self-Compassion

Self-compassion is a vital practice that can help us to reduce stress and increase our ability to enjoy what we can in difficult circumstances.

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Self-compassion is treating ourselves with the same care, kindness and concern that we would give a friend, when they are in pain or difficulty. It involves exploring soothing touch and soft vocalisation which release oxytocin and endorphins and help to reduce cortisol and relieve pain. Self-compassion also involves setting appropriate boundaries to protect our property, our time, or our emotional, mental and physical well-being. 

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Kate Brandram-Adams, from Mindfulness North Canterbury, presented a workshop for us on this topic. Watch the recording here. 

 

For more information:

Mindfulness

Mindfulness is a practice that can help us to cope with the impacts of living with a chronic illness such as ME/CFS. It may enable us to notice changes to our symptoms sooner and give us an opportunity to bring a more compassionate response, rather than pushing through. It can also be useful for taking our attention away from our symptoms and may help to calm our autonomic nervous system (ANS). 

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Di Robertson, a mindfulness mentor, has previously led a presentation and practice session for us. Watch this on YouTube.

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For more information:

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Finding Resilience

Elizabeth Hamilton, a social worker and counsellor, has talked to us about finding resilience when debilitating illness brings many changes to our lives, along with loss, and grief.

 

Being aware of our circle of control and approaches for living through and with loss and grief can make a difference. We invite you to watch the recording of Elizabeth's session on YouTube.

Te Whare Tapa Whā

Te Whare Tapa Whā is a wellbeing model developed by leading Māori health advocate Sir Mason Durie in 1984. The model describes health and wellbeing as a wharenui/meeting house with four walls.

These walls represent taha wairua/spiritual wellbeing, taha hinengaro/mental and emotional wellbeing, taha tinana/physical wellbeing and taha whānau/family and social wellbeing. Our connection with the whenua/land forms the foundation.

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When all these areas are in balance, we thrive. When one or more of these is out of balance our wellbeing is impacted.

 

Occupational Therapist Sarah Phipps led a presentation and workshop for us and highlighted some specific strategies for people with ME/CFS, including finding ways to live with loss. You can watch the presentation on our YouTube channel. 

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