Disclosing your diagnosis

February 27, 2020 | Advocacy, Life with MS, Support, Uncategorised

Photo: Radio NZ /Dom Thomas

Written by Amanda Rose, MSNZ National Manager

Disclosing your diagnosis may not be the first step…but it can be the biggest leap in a new positive direction

Disclosing any diagnosis privately, let alone publicly, takes a lot of courage and bravery. On Wednesday 26 February Greens MP Golriz Ghahraman recorded an exclusive interview with The Project to publicly announce that 18 months prior she had been diagnosed with Multiple Sclerosis.

Multiple Sclerosis is one of the most common diseases of the central nervous system (brain, spinal cord and optic nerve) impacting over 4000 New Zealanders. Women are three times more likely to be diagnosed and the average age of diagnosis is between 20 and 50 years old.

We know from research that people have better health outcomes when they are open about their diagnosis, whether that is just with close family and friends, or also their wider networks. That said, disclosing is very difficult for many people. There is often a stigma attached to Multiple Sclerosis, and chronic conditions as a whole, which is largely driven by a public misunderstanding and lack of knowledge.

Why do people keep their diagnosis to themselves?

A diagnosis of Multiple Sclerosis can stir up a whole range of thoughts and emotions including shock, disbelief, relief, grief, confusion.

For many, delayed disclosure, as Golriz discussed, is to do with the fact that they are still coming to terms with the diagnosis themselves, getting their head around what it might mean now and in the long term. Personal acceptance is just the first of many steps. Disclosing is a very private and personal act, not knowing how people will react puts added pressure and stress on a person, but if well received can relieve this. A problem shared is a problem halved.

Unfortunately, MS is often a condition which people keep to themselves for fear of not knowing how people will react and also not wanting peers to change the way in which they act towards them. A big worry is that someone may lose their job, so having a high-profile figure make their announcement so bravely and publicly will go a long way to breaking down those barriers.

What does it mean for the MS community when a high-profile figure discloses their diagnosis?

When a high-profile person discloses their diagnosis we know from experience that this opens doors for other people feeling comfortable sharing their own news. Sharing their story in an open and positive way, particularly from someone who is managing their condition successfully and continuing to work breaks down the barriers.

The numbers of high-profile New Zealanders who have come forward with having Multiple Sclerosis, or a connection to it, are few and far between. This has made raising the awareness for MS more difficult as we have lacked the public voice box.

From others who have opened up publicly about their diagnosis we know that this encourages people to reach out, thank them for their bravery and are inspired to be more open themselves.

People such as Selma Blair, who starred in many iconic films for the generation who are most likely to be diagnosed at this time, has opened the door for acceptance, conversation and encouragement for people with chronic conditions and disabilities. More FM Breakfast Club’s Sam Baxter received hundreds of messages from fans thanking her for her bravery and openness when she revealed her diagnosis in March 2019. Many thanked her for encouraging them to also finally share their own MS.

When I started with Multiple Sclerosis NZ over seven years ago hardly anyone was willing to publicly share their diagnosis. However in September 2019 we ran the second year of our My Story : My Strength : My MS Campaign. A small, social media led campaign that started in the first year with three stories, grew to being inundated with people contacting us wanting us to share their story. In the end our campaign ran for an extra week and shared the stories of 16 New Zealanders with MS.

We put this down to several factors, public figures being more open at acknowledging their diagnosis, greater access to treatments mean people are treated earlier reducing the impact of the condition and keeping people active and in employment, developments in research paving the way for the development of new treatments and understandings about MS, and a growing public recognition and acceptance. There is still a long way but we’re on the right path.

For many years MS has been a condition which people have often shied away from disclosing. You often hear “Oh I knew someone with MS, they were older and in a wheelchair it was very sad.” But now people are surprised that the highest demographic of people with MS is young, strong, hardworking females, just like Selma, Golriz and Sam.

What is the public perception of MS and how can we all work together to make a difference?

Multiple Sclerosis affects each person very differently. People may experience a variety of symptoms including debilitating fatigue, chronic pain, mobility and spasticity issues, vision problems, difficulties with speech and swallowing, bladder and bowel issues, cognitive changes. The complexities of MS make the condition difficult for many people to understand.

The most difficult symptoms to live with are often the unseen. Many people are often told that they ‘look fine’ and that can be extremely damaging. Feeling disbelieved because a symptom is unseen can lead people to not disclose their diagnosis increasing isolation and impacting a person’s mental health.

The public can help by being more open, understanding and accepting. Take the time to educate yourself about Multiple Sclerosis, how it impacts a person’s life and how you can support someone. Talk to someone with MS, don’t be afraid to ask questions. Visit our website and learn more.

Also, realising that what you see from the outside does not tell you why a person may need to use a disability parking space, or need some extra support at work. Don’t assume that just because a person ‘looks fine’ on the outside that they are.

For many, the unknowns about Multiple Sclerosis, the future, and the distressing symptoms many experience lead them to believe their life as they know it is no more. It’s not. It’s important to remember that yes MS is a chronic condition but people are living full and happy lives, and a lot of that is down to positive support from people close to them, in their community through support services, progress in research and improved access to life improving treatments.

Thousands of people in New Zealand and millions across the world are living full and happy lives thanks to progress in research and greater access to treatments.

Supporting organisations such as Multiple Sclerosis New Zealand who advocate to improve access to services and treatments and regional societies across the country who are helping the 4000 people living with MS in the communities will go a long way to improving the quality of life of people with Multiple Sclerosis across the country.