Room 5 is the name of Helena Merriman’s new radio series and podcast for the BBC which features eight stories of life-changing diagnoses. Its title is a nod to the significance of the room in which everything changes. The space where you walk in one person but come out of the door another.
When I first heard the trailer on Radio 4, it stopped me in my tracks because it resonated so strongly with my experience of being diagnosed with an MPN. The consulting room and ‘moment’ etched forever in my memory and mind’s eye.
As I am sure yours is too.
I begin with Room 5 – which you can listen to for free on BBC Sounds – because it sparked the idea for this month’s blog post in which I share some of my own thoughts around thinking about and discussing an MPN diagnosis with others. In particular, the psychology of having a chronic, rather than acute, disease and the experience of living with an invisible, rather than visible, illness.
Of course, it is important to say upfront that not everyone shares the same perspective or experience.
For some, it might be a diagnosis that barely infringes on your day to day life, a morning aspirin and haematology appointment the only reminder of an MPN quietly humming along in the background.
For others, symptoms may be a constant and familiar presence, recognisable passengers who routinely climb aboard your bus of daily life.
Whichever camp you fall into, I hope that some of the reflections jotted down here strike a chord or give voice to a feeling or experience you may have had.
One of the things that has struck me most about having an MPN is that it doesn’t fit neatly into the usual ‘diagnosis, treatment, cure’ cycle. Its chronic state confounds this expected time line and therefore is hard for some to comprehend or get their head around.
“Sorry, what did you say you have?”
“Does it impact your life at all?”
“So, will the treatment cure it?”
“Will it affect your life expectancy?”
These are all questions I have been asked since being diagnosed with ET. Until the pandemic hit, I hadn’t shared my MPN diagnosis with friends. This was in part because of my own uneasiness around disclosure and internal struggle with the label ‘blood cancer’ and its connotations.
On the one hand, I didn’t want it to become a prism through which others identified and thought about me. Fears around future job applications and questions of disability and transparency swirled around in my head. If the diagnosis was out there in the world, would employers discover it and discriminate against me?
On the other hand, I wrestled with the idea of diminishing the impact and experience of having an MPN. Would leaving out the ‘c’ word diminish the severity of symptoms and seriousness of available treatments? Why, I reasoned, should ET patients be told that’s what they’ve got but downplay it because it’s ‘for life’ in many cases? Why should they face the psychological baggage and strain of an uncertain future without the true cause being referenced or acknowledged?
My raft of symptoms means ET certainly does make its presence felt, and if I have to take an oral chemotherapy drug in the future, then I didn’t want to hide my fears and worries about the significance of taking this step from friends.
As you can probably tell, this mental chatter led to complete inertia. I told no one and bumbled along as I’d always done.
But then, Covid-19 arrived, and the necessity of shielding for months on end meant I could hide it no longer. I didn’t leave out the phrase ‘blood cancer’ when telling friends, but followed it up with the caveat of “it’s chronic” and “it’ll likely always be there”.
Looking back I sounded a bit like a lost employee of the Dog’s Trust! Explaining that a dog is for life, not just for Christmas…
But humour aside, I did – and still do – find it difficult. I am grateful every single day that I am not living with an acute disease and often feel guilty for feeling down about ET and my symptoms when others are faced with situations far worse and critical than mine.
However, ET is not always an easy path to tread.
Although classed by some as the relatively ‘benign’ sibling of PV and MF, symptoms can be scary and debilitating. Being chronic does not mean it is a walk in the park.
And this leads to a second challenge posed by MPNs: the fact that they are, by and large, invisible illnesses. If my parents had a pound for every time they’ve been told, “but she looks fine doesn’t she” and “you’d never know”, they’d frankly be on a year-long cruise round the Caribbean.
But just because we don’t look like we’re on the brink doesn’t mean that we feel A1 one hundred percent of the time.
This was captured beautifully by Bernadette Ryan in her series of exceptional poems about living with ET for MPN Voice, which you may have read late last year.
Her poem entitled ‘Fatigue’ was particularly moving.
I often ask my sub-million platelet count why it’s rocking the boat when another patient’s 1.5 million platelets are allowing them to run round the block or climb Mount Kilimanjaro.
I know it is a fruitless and unanswerable question at present, but there’s no denying that it often crosses my mind.
And the key thing is that chronic does not mean consistent. Symptoms can wax and wane, appearing and departing at different times of the day, month, or year, entirely of their own accord. With no advance warning or polite departure note.
The unpredictability can be difficult and lead to misunderstanding.
Telling friends that you’re unable to make tonight’s dinner or weekend visit to London as planned. Not because you don’t want to, but because today – out of nowhere – you feel like your battery’s run flat.
A quote that has stayed with me is from the writer, Russel T. Davies, who remarked after years of caring for his husband:
“There are two worlds – the world of the well, and the world of the ill. No one in the world of the well can imagine the world of the ill. And no one in the world of the ill can remember what the world of the well is like anymore. They marvel that it ever existed. They feel they will never go back there.”
This is such a powerful observation. About two parallel worlds sitting side by side.
Sometimes, as MPN patients, we pass from one world to another. Spending a bit of time in the land of the ill before crossing back into the land of the well.
Having a chronic disease means that we stand precariously with a foot in both camps.
We have a season ticket for both, but there’s no schedule to predict when we’ll be visiting either.
Instead, we live in a liminal, suspended state as our MPN ticks away, hidden beneath the surface.
Those around us might not always be able to see it.
But that doesn’t mean it isn’t there.
You can listen to Room 5 by Helena Merriman on BBC Sounds here: BBC Sounds – Room 5 – Available Episodes. Alice will be along next month with another blog post about young MPN patient experiences. You can contact Alice by email – firstname.lastname@example.org .