Hi everyone, and welcome to my 56th Crap Poem as part of the COPE campaign.
This poem is a serious one, despite the rhyming.
Let me start by explaining my reason for getting so worked up about this. As some of you will know, some of my more disabling diagnosis are ME/CFS, Ehlers Danlos Syndrome (a genetic connective tissue disorder) and Post Covid Syndrome.
These diagnosis have been difficult to obtain, despite my reducing mobility and constant pain. As a patient, I’ve been met with unconscious bias and stigma on many, many occasions when attending appointments, but in the end I found two different specialsits, who were able to provide the testing and look at the diagnostic criteria in more detail and with some empathy. Finding them was difficult, and accessing them just as hard, but thankfully they could see I needed their help.
Despite now having the diagnosis, treatment is difficult, and not a ‘one size fits all’ situation. My pain changes depending on many factors, and my fatigue is the same. ME/CFS is a heavily misunderstood problem, with patients regularly experiencing levels of exhaustion well outside of the norm and without good reason, but still being labelled as lazy or ‘tired’ by people they trust. Their pain fluctuates and moves around in a similar random pattern, and is also often wrongly labelled as other problems, inclusing mental health concerns.
I am one of the thousands of patients who’s come up against this dangerous and upsetting narrow-mindedness.
You might have seen some negative press recently for the popular BBC programme, Dragons Den. During an episode in January a woman obtained investment for her company that sold alternative therapies such as Ear Seeds, which she suggested supported her recovery from ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).
As someone diagnosed with the condition, and as someone living with Chronic Pain that’s often unmanageable, I understand the need that desperate patients have to look at alternative therapies, but advertising them as safe treatments without understanding fully what their positive and negative impacts are, is always dangerous (IMO).
Personally I don’t use such therapies for fear of making a big problem even worse, but I still understand why others are tempted. When your pain is bad, when your fatigue is impossible to bypass, you’ll do anything to change the status quo.
In response to the episode complaints, the BBC briefly took down the episode, but at time of writing it was available on iPlayer again.
Charities were up in arms, especially those working with ME patients, who are commonly suffering, misunderstood and desperate for help.
The ME Action organisation have been actively discussing the episode on social media, and talking about the real life impact of ME. They regularly cite 3 stories of women in the UK who lost their lives to the disease, all in the last 20 years, and weren’t offered appropriate care during their illness. This lack of care and unconscious bias impacted their health and, ultimately, lead to their passing.
Their names are Merryn Crofts who passed in 2017 at the age of 21, Sophia Mizra who passed in 2005 at the age of 32, and Maeve Boothby who passed in 2021 at the age of 27.
You read that right, the last death was in 2021 and all 3 women were 32 and under.
I was horrified. How have no lessons been learned, and how is such health stigma so intrinsically infiltrated within the NHS and social care systems? These women were told that their problems weren’t ME (despite being diagnosed), that their illness was actually a mental health concern, and in Sophia Mizras case, wrongly sectioned.
I was compelled to write a poem about all this, a bloody angry poem too, because when I read their stories I knew the problem was endemic within these organisations. How do I know? Because I’ve been met with the same stigma myself on multiple occasions. It’s not just neglectful, it’s harmful and promotes shame for people who are already struggling.
I hope to send this poem to ME Action so it can be passed on in some way, and I hope it provides some relief to others who know what it’s like to be told your pain is ‘all in your head’ by professionals who should simply know better.
I see you, I hear you, and it’s important you keep pushing for answers.
Remember – if you or someone you love is struggling with ME/CFS or if it’s causing a seperate mental health concern, there are lots of helpful support lines and organisations you can contact for help on my mental health and suicide prevention support lines page and my Get Support page has details for many organsiations, including ME Action.
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Chronic Stigma
ME is like a marathon,
your body never ends the run.
Cycled pain and harsh fatigue,
a hopelessness in its own league.
So consultations shouldn’t cause
deaf ears to form with pregnant pause.
Healthcare staff should just know better,
be empathetic to the letter.
But in these stories you will see
healthcare failing catastrophically.
Breakdowns in communication.
Stigma breeding, no collation.
Watching patients, jarred by pain,
then making ugly, lethal claims.
These horror stories, young of age,
were failed at every single stage.
Promises of ‘joined up thinking’.
Red tape that only left them sinking.
I’ll name the women who have died.
They’re more than just their pain-fuelled cries.
Merryn Crofts was 21,
‘Anorexic’ was the tale they spun.
Sophia Mizra, 32,
Wrongly sectioned, she’s passed too.
Maeve Boothby, 27 years.
Met with prejudice from peers.
Those they trusted gave them shame,
claimed their disease was just ‘fake pain’.
Confusion for their mental state.
Procrastination, made them wait.
I can’t believe that I must stress,
this country has an NHS.
World-leading healthcare, so we’re told,
and treatment plans worth weighted gold.
Peers who’ll listen to your story,
not fanning pain to flamed furore.
So tell me, how did we get here?
These women died through 20 years.
How on earth weren’t lessons learned?
Our healthcare trust has to be earned.
But most of all I can’t believe
the system is the pain we grieve.
ME is nothing new to them
but still the symptoms they’ll condemn.
Why trample on pains desperate voice?
Why is stigma still a choice?
I’m sorry for the greatest shame,
that nothings changed, death caused in vein.
Feeling see-through, silent, low,
we want to change the status quo.
Pain that’s chided, stuck like glue,
the private market has to do.
Law in our hands seems our last chance.
Alternatives, a devils dance?
Is it working, what’s the bill?
Or are these more placebo pills?
I am talking, you should too.
Speak out about this stigmaed slew.
Don’t let them downplay what you feel,
don’t let them tell you it’s not real.
Ask questions, take notes, push for help.
Don’t stop until you’re back to health.
Their pain was real, and ours the same,
and lack of trying ain’t to blame.
For every life that’s been cut short,
for every time they scoff and snort,
for every groan that’s been ignored,
for every time the pain encored,
for every person still untreated,
for every time we feel defeated,
I’m sorry that it’s just too late,
Our healthcare system is a state.
I’m sorry that these lives were lost,
to Boothby, Mizra and the Crofts.
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Remember if you need more distractions then there are more jokes on my Hold Humour page, as well as haikus on Haiku Hope, awful poems on Crap Poems and odd language in Weird Words. I also have a Tpage dedicated to stress hacks and other ideas to try if you need a distraction within the COPE campaign section of this website.
Thanks for visiting 🌲
Creative Steph 