Green MP Golriz Ghahraman has revealed she was diagnosed with multiple sclerosis and hopes to remove some of the stigma around the disease.
Golriz Ghahraman. Photo: RNZ /Dom Thomas
Ghahraman said she first learned of her diagnosis two years ago when she began to lose sight in one eye.
Multiple Sclerosis - or MS - is a disorder of the central nervous system and can affect the brain, spinal cord and optic nerves.
Today is the first time I spoke publicly about life with MS.
— Golriz Ghahraman (@golrizghahraman) February 26, 2020
I've learned so much about community, equality and access to care. Mostly, it showed me how strong and capable the MS and broader disability community really are – and the importance of our right to representation
Ghahraman told Morning Report it was frightening when she began to lose sight, but hoped it would resolve on its own.
"I'm one of those people who thought 'she'll be right' and didn't go see a doctor and kept turning up to work. Eventually, my colleagues said after this sitting week, you're going to the hospital."
She said MS affects people differently and hers was one of the more alarming ones.
"You think, is this going to become a constant in my life, will I lose vision completely. But I had this incredible access to care and everyone in the hospital kept me calm and kept telling me that it's an illness that people can live with it really well - which has been my experience over the last couple of years."
Ghahraman said there was an initial period of shock which she got through by connecting with fellow sufferers.
"Eventually, once I felt like I had a handle on what it was to live with MS, I realised there's a stigma and maybe that's a little bit unfair."
She said people in the community told her about their fears of speaking out publicly about their diagnosis for fear they could miss out on jobs or promotions.
"I just thought, wow, we need to talk about this."
"There is a stigma and maybe that's stopping us from having that sense of equality to care and to be treated as who we actually still are.
"After the diagnosis, I thought might help to have someone that's in the public eye and doing work that's considered demanding while living with MS."
She said the other thing she realised was that, while we're lucky to live in a country where people have access to healthcare, there are major challenges the health system faces.
"But, our healthcare system is very under-resourced in different ways. So, while we have all these incredible nurses and doctors running around and trying to do their best with what they have, for MS sufferers at least, for me there was a huge waitlist for the MRI scan I needed just to get the diagnosis.
"All these are things we kind of know, but we don't know until we've lived it and lived with the anxiety of trying to manoeuvre through the health system, so that's the other thing I thought we needed to talk about more."
