(*this post is about living the diagnostic process of a serious chronic illness and may contain triggers)
They have to rule out worse alternatives
But it’s almost definite,
As geneticists speak of neurologists
Physiotherapists, cardiologists
And, if they deign to see me,
Rheumatologists,
There’s a remote possibility
Of the one specialist
Rehabilitation place in the UK,
Over-subscribed of course,
Everywhere is these days,
Though I’m aware
My eyes have glazed
I’m pretending I’m OK,
And part of me is unfazed
As we talk of worrying family histories;
Like dad’s aneurisms
And they list my brain damage, spasms,
And remark on my translucent skin,
Its softness, how elastic, how thin,
Examining pale scaring
Like a map of origins,
Questioning all previous diagnosis
While explaining a new diagnostic process;
5 more months after forty years,
Talk of heart scans and blood tests
As they bend my joints back
And the ache echoes in my head
As I bend myself to hear
Of risks of valve or organ prolapse,
Another turn of the Rubik’s Cube;
Not told I had cerebral palsy ‘til my twenties
Fibromyalgia and M.E. in my thirties,
My asthma, allergies, the wounds inside me
Of endometriosis and all the rest,
And now more tests,
I can’t stand to help them measure my weight,
They measure my height while holding my gait
And I’m impressed the doctor holds my gaze,
Does not patronize, explains scientifically,
But there remain all those unmeasured whys,
I refuse to panic
As I go back over life
Knowing the curative
In knowledge,
But I do still mind,
We wheel away on an edge
Marking the distance
From the clinic,
“I’m frightened,”
I whisper into a forgiving silence,
“I’m right here”
Says the one I’ve loved so long
As he adds with a quip of his lips
“Right here, beside you, stealing your chips.”
Antonia Sara Zenkevitch
Why can they not just admit we are an enigma, mystery, riddle just plain undiagnosable . We suffer the will not drop their pride 💜
Although I agree we are all enigmas and the medical profession only knows so much, I believe useful or accurate diagnoses can often provide information to help save or enrich lives and dignities. Everyone is different but I’m aware that an earlier diagnosis in my case could have limited a lot of pain and helped prevent bedbound years. The process is awful but I now need as much accurate information as they can provide so I can continue to fight. Yesterday was a battle, hopefully they’ll be brighter skies returning soon. Thank you for your caring. x
Can truly relate to this
Hello Huma, lovely to ‘meet’ someone who can relate to this but at the same time I’m also sorry that you do because I wouldn’t wish this kind of thing on anyone.