I was elected then diagnosed with MS. My disease has taught me about representation – The Guardian

Golriz Ghahraman was elected as a Greens MP in the 2017 New Zealand election. Photograph: Golriz Ghahraman

In politics, as in any field, we bring the whole of ourselves to our work. My first term will always be a little defined by my health: 2018 was the year I was diagnosed with multiple sclerosis (MS).

That isnt something I have spoken about publicly before now, because, as most people with chronic illness or disability, I didnt want it to define me, define my work or what people expected of me.

It happened in February 2018. As I was finding my feet and processing life as an MP, I started to lose sight in my left eye. I thought it was a fleeting annoyance and left it for a week. When I finally saw my doctor, she told me to go immediately to hospital. I had optic neuritis damage to my optic nerve which the ophthalmologist gently told me was often the first symptom of MS. It was a fifty-fifty chance.

Thats how I know Im a glass half full kind of person.

Not me, I thought. Ill be okay.

I went back to work like nothing was the matter. So began a months-long process of tests, waiting lists, and trying hard not to google an illness I was not diagnosed with.

The diagnosis, when it finally came, felt like a relief. The limbo had been torture. It took another six months to gain access to medication. It turned out you need two attacks to qualify.

I am deeply grateful to live in a nation like New Zealand that believes in public healthcare, grateful that weve collectively decided that if one of us falls sick they should get expert treatment and medicine.

But Ive also learned how frighteningly under-resourced our medics and hospitals have become. Living with chronic illness comes with constant battles for access to information, treatment, testing, and re-testing, as well as constant battles to be heard. I know the waits are longer for some, I know the privilege I had in speaking the right language, knowing what to ask for, and even then, despite the incredible dedication of everyone I encountered in our hospitals, access to treatment was a gauntlet. I learned that nurses are gods and goddesses who walk among us and should be paid their weight in gold.

Ive been told from the moment of my diagnosis, by all the medical professionals involved, that this is not the illness it once was because the new treatments contain its progress. No one ends up in a wheelchair, they say ad nauseam. They mean to be reassuring. Sometimes I wish what we said instead was: Its okay to end up in a wheelchair. Youll still be you, and well help you live better by making the world accessible, as it should be.

For me, MS comes with fatigue, sight impairment (now fully recovered), and numbness in my feet and legs.

Telling people you have MS means being met with terrified silence, or an outpouring of grief and love, which in its own way is overwhelming at times. It means reassuring people that youre OK, that youre still the same person.

What transpired, the more I spoke with others with MS, or indeed other disability or chronic illness, was that many had experienced a sort of well intentioned stigma. Their stories were about sympathetic bosses who presumed and overtly asked their recently diagnosed employee when she would be standing down from her role. Some realised they werent promoted because more demanding roles were considered too much for them. The ever-triumphant MS community laughed as they told anecdotes about their ongoing career success after those initial demoralising set-backs. A sort of well I showed him, didnt I?. But that comes with hiding, declining to speak about our condition, saying were fine rather than explain the realities or ask for assistance when it might help.

What finally propelled me to speak publicly was that I realised my new community were a little scared for me. There was love and encouragement. The fear was that when the able-bodied, non-chronically ailed community learned of my condition I would be undermined. That was reason for me to speak.

All peoples deserve to see ourselves, the whole of ourselves, in our House of Representatives. Knowing first-hand about the challenges of life with complex health needs or disability only enriches decision-making in any arena. Whats more, it forces our world to adapt and treat us as equals.

Last week when I finally spoke publicly about life with MS, I wanted to share what I have learned about community, equality, and access to care. Mostly, this journey has showed me how strong and capable the MS and broader disability community really are and the importance of our right to representation.

Golriz Ghahraman is a Greens MP in New Zealand.

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I was elected then diagnosed with MS. My disease has taught me about representation - The Guardian