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.

 

 

3 comments

  1. I love the brilliance behind your though process. You’re absolutely right, many of us that suffer from different chronic neurological and auto-immune diseases suffer very similar symptoms. Wouldn’t it be wonderful if we had a “National Invisible Disease Awareness Day” and clumped everyone into solidarity? Love it!

    Liked by 1 person

    1. It would mean all of the fundraising and grant money invested in awareness raising could be combined, hopefully with real impact.
      Personally, I don’t mind if someone doesn’t know much about MS. But I do care – a great deal – if they don’t understand about invisible illnesses and disabilities.

      Liked by 1 person

  2. I manage chronic fatigue everyday. What a brilliant idea to get the peak bodies working together to improve community understanding, and to foster more support for those with chronic illnesses to feel connected and valuable. And to continue to work productively if they are able.

    Liked by 1 person

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