Interviewing the chronically ill: We have more in common than not

‘Citizens of sickness’

For my current project, We Don’t Talk About, I am walking into people’s lives and asking them the most intimate questions. To my continual surprise, people let me in.

Yes, it helps that the project is part of my Hot Desk Fellowship at The Wheeler Centre, and that MS Australia is on board.

But I think the real reason people answer my questions is that I am sick too.

In my first interview with a man with early-onset Alzheimer’s disease, we actually gave each other a high-five because we take the same drug.

In the words of the late Christopher Hitchens, we are the ‘citizens of sickness’.

What we have in common

I am learning there is so much to learn from the chronically ill. And I am not forcing positivity here – I despise the fake or forced positivity inherent in so much of the media on disease and illness – I actually mean it.

I have Multiple Sclerosis. And I learn a great deal from others with MS. But I am increasingly aware that I can learn a great deal more from those with other neurological and invisible chronic diseases.

Although each diseases manifests differently for each individual and no two people have the same experience (and I cannot emphasis that point enough), depending on my ever-variable symptoms my lived experience may mirror that of someone with Parkinson’s disease or Chronic Fatigue Syndrome or any number of other conditions.

To date I have interviewed individuals with Alzheimer’s disease, Chronic Fatigue Syndrome, Diabetes, Major Depressive Disorder, Motor Neuron Disease, MS, Pancreatic cancer, Parkinson’s disease and Ulcerative Colitis, as well as a woman with an acquired brain injury.

Yes, our diagnoses and prognoses are different. And we look different type of sick in the various scans we have.

But the grief and fear that we face, alongside the potential discrimination and disability and depression, are often the same.

What would happen if…

There are so many different diseases, each with their own annual day and fundraising activities and awareness campaigns…

What would happen if the peak bodies of each disease worked together to achieve their goals (whether that be awareness raising or substantive policy changes or fundraising), instead of splintering in every direction, leaving those of us who are sick to face the ever-present barriers those organisations are meant to address.

It is something to talk about.



Telling people you are sick: The good that can come from it

My current project, We Don’t Talk About, talks publicly about the impact of chronic disease on a person’s life. Important, but not necessarily happy.

So I thought it was time for some good news.

In her 2012 TEDMED Talk What happen’s when one person’s disease becomes everybody’s business?, Gail McGovern (the CEO of the American Red Cross), talks about how going public with her breast cancer helped her. It helped her through her diagnosis, her treatment and all the way through her recovery.

‘When the TEDMED folks asked me if I would talk about this topic I figured if there is just one person who gets a single nugget out of what I am talking about, then it will have been worth it for me to put myself on the line like this’.

And yes, for those of you who are ill, she points out what we have all experienced, the ‘look of awkwardness’ healthy people get when they are around us.

MS Australia’s National Advocacy Conference: What is the plan?

The point of the annual conference

The annual advocacy conference of MS Australia was held in Canberra in October 2015. It brought the staff of MS Australia (the national peak body for MS in the country) and the staff of the independent state-based MS bodies together. But most importantly (from my point of view), it put the Advocates front and centre.

Advocates are people living with MS or carers of people living with MS. They know MS intimately, however much they would rather not. And they understand what it is like to be inside the healthcare system and at the mercy of policies and programs that may (and may not) make sense. They know what it is like to get lost in the system, and they know what can be done to improve it.

I have been an Advocate since March this year, and this was the first time I saw the organisation and Advocates in action, up close and personal. I was greatly impressed.

The plan for 2016

The conference was not just another conference, full of talk but no action. The talk resulted in a plan, and that plan will see the organisation and advocacy efforts through 2016 – a Federal election year, and therefore a year when advocacy matters.

In this election year, key areas of advocacy will be:

  1. Securing funding from the Medical Research Future Fund. Australian-based research into MS is world-class, largely due to the efforts of MS Research Australia and a number of research partnerships with universities and hospitals. Further funding, possibly in the form of seed investment, will create both hope for those living with MS as well as measurable research and employment opportunities within the Australian medical research community.
  2. Continuing to support the the rollout (and improvement) of the National Disability Insurance Scheme (NDIS). While roll-out dates have been announced for New South Wales and Victoria, much of the country is not yet certain when the NDIS will cover them. This creates uncertainty and needs to be addressed. In addition, ongoing evaluation of what difference the NDIS actually makes to the lives of those with MS will also be required, which means maintaining the flexibility of the scheme to enable ongoing modifications and improvements.
  3. Continuing to advocate for young people in nursing homes and the provision of adequate housing and assisted living. Caring for young people in nursing homes (whether they have MS, another chronic disease or they have suffered an accident) is simply a travesty. Australia can, and should, do better, and this includes access to adequate housing alternatives.

Individual states and Advocates will advocate on other localised and personal issues as they see fit. The national advocacy campaign, however, will focus on these core (and national) issues.

Collaboration with organisations representing other chronic and neurological diseases who share the same goals will be actively pursued. We can all benefit from an improved healthcare system, after all.

Thoughts and further insights welcome.