Imagine being struck down by excruciating soreness in your knees and joints, huge pressure pushing on your legs and arms and hot searing pain traveling down your back. Next combine that with a full body ache and fatigue so great you can’t even form a thought along with sensitivity to light so bad that the only option is to lay still in a darkened room while being overcome by pain that you are powerless to stop.
For Aroha Taane this is an everyday occurrence as she becomes overcome by a systemic lupus erythematosus (SLE) flareup. Lupus is a chronic disease that occurs when your body’s immune system attacks your own tissues and organs, there is no cure.
In Aotearoa, Lupus affects 1 in 900 people and occurs in women 90% of the time. The biggest problem according to the Lupus Trust NZ is that “lupus can present itself in a bewildering number of ways, often mimicking other diseases. It can be difficult to diagnose unless the GP or specialist is alert to the possibilities”. What causes lupus is not fully understood, although doctors conclude that it is a combination of your family history as well as external environmental factors.
Learning how to cope with her disease has been an ongoing journey and one that has been life changing for both Aroha and her whānau.
The thing about this illness is that it doesn’t just affect me physically, it affects me mentally and emotionally, it impacts on all aspects of my life and on the life of my family. And because of that it’s taken us time to adapt, we’ve really had to change dramatically to help support one another.”
To cope with her illness Aroha has had to make a full lifestyle change, from a very active life to a more relaxed less strenuous one. She is aware of how her mental and emotional health affects her physical health and works each day fighting her condition.
Over the years, Aroha and her whānau have been working hard to make things work, recently a friend put Aroha in touch with Te Arawa Whānau Ora to help the whānau create some short term goals while looking at what long term plans she and her whānau could work towards.
Te Arawa Whānau Ora are a collective of seven passionate Māori health and social service organisations committed to supporting whānau by providing wraparound support with a focus on helping whānau and in particular rangatahi succeed.
Together Aroha and her whānau worked through their whānau goals and with the help of their paearahi were able to create a plan that they could work towards.
“Having the support of our paearahi was exactly what we needed, they helped by showing us pathways to supporting our own needs. And for me, most importantly, they were not judgemental, which is what I needed… To feel safe.”
Te Arawa Whānau Ora believes planning is critical to whānau success because it allows each whānau to self-direct their own goals and work out the strengths and skills they each bring to achieving these goals.
“Living a healthy lifestyle has been a major outcome of our plan” explains Aroha, “although I was always active and healthy prior to having lupus, it was after my initial diagnosis that things went downhill, it was like a darkness came over us, but over time I was able to deal with the extreme lifestyle shift, now I’m another track and most importantly feeling comfortable with that track!”
For many having a plan, helps take those big dreams and ideas, and turn them into small achievable steps.
“Having a plan enabled me to maintain focus on achieving my goals. By breaking things down, it didn’t seem so huge and overwhelming. It also made me accountable, because now it was out of my head and on paper.”
“Living with lupus is a challenge but having this plan helped so much”, says Aroha. “Each and every day I am grateful to my whānau for their unconditional love and support.”
Struggling with Lupus?
Aroha is keen to create an informal support group for locals. If you or someone you know is battling this disease, please contact Te Arawa Whānau Ora and they’ll put you in touch with Aroha. Mauriora!
About Te Arawa Whānau Ora
In June 2010, the Te Arawa Whānau Ora Collective was founded in Rotorua by a group of passionate health and social providers.
Te Arawa Whānau Ora works because it put them in the driver’s seat, they defined their own goals and made their own decisions. As a result, they will be warmer, healthier and less stressed while facing future challenges with greater strength and resilience.
Te Arawa Whānau Ora has helped over 1500 individual whānau members over the last year.