The Impatient Patient

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There is a lot of frustration happening in the world of Dysautonomia, in fact, in the worlds of all chronically ill patients.
For some, diagnosis is fast and a cause is identified, treatment begins.  Sometimes treatment is successful.
For others, for so many… diagnosis takes years.  People are often mis-diagnosed first with anxiety, depression, hysteria and all manner of strange conditions.  Until someone starts to put the puzzle together, piece by agonising piece.  Someone recognising that the pattern of symptoms is autonomic is usually the start of that process.  Sometimes, that someone is the patient themselves, forced into a position of applying their non-medical brain to medical journals.  It is a scary and difficult job, sifting through medical literature, looking for words you recognise, learning as you go.  But you have to.  Who else will take the time?  To whom else does your life matter enough that the research is worthwhile?

I don’t know why some doctors are excellent and others are not.  But I know what the experience of a good doctor is from a patient’s point of view.  A good doctor is prepared to listen.  They will ask you good, probing questions.  They are thorough, respectful and give you time to respond.  That’s important when your brain is foggy and your words don’t always step out in the correct order.  It requires patience toward the patient. I guess that is hard when the schedule is busy and they’ve been listening all day.  But a good doctor, even after years of practise, can still say “What if?” and “I don’t know, let me see what I can find out…”.  A good doctor is prepared to engage in the conversation with an open mind.

I’m sad today.  Sad because since I’ve been working on this blog, I have a much more personal realisation about the affect of Dysautonomia on the lives of people who have reached out to me.  Even here in New Zealand.  I have had messages from people, more than ever before.  Can you help me?  My doctor won’t help me.  I need information.  I need recognition.  I need support.  They are asking:
How can I make my doctors care about me?  Take notice? I am declining. My life matters.  Why don’t they care?

Like them, I too, am locked in a frustrating dance with a doctor who doesn’t seem to care. He is my main specialist and has taken over my case from someone who cared a lot. The contrast is painful.  When I am in his consulting room I can see his attention drift off, his thoughts elsewhere.  He often begins by saying things like “I see you have had an admission, but you are quite well now?”  The question mark is an afterthought.  I am supposed to say, ‘yes’ and go through the motions of the rest of the consultation so he can tick his boxes.  But I am not ‘quite well’.  My daily life difficulties are increasing all the time.  We are accommodating the changes the best way we can.  Navigating the path of progressive illness without guidance, lit only by the flame of our own frustration.  He has decided the best approach with me, is to “observe the progression“.  And because he has decided this, I must oblige.  I am powerless to suggest, enquire, wonder, report, relay, present, offer… anything further.  Because the doctor has decided.

But, Doctor.  This life I have.  I love it, I need it. Even broken and interrupted by illness, I want to be here.
It is valuable to me, Doctor, in your armchair.

I choose to fight for my family, for the love that pulses out past my illness and into every corner of their lives.  I choose to fight for the autonomic nerves that have not yet been damaged by this disease.  The longer you leave it, merely observing my progression, treating the symptoms, waiting, watching; the more my ganglia are picked off, one by one. 

And there it goes. Another day.  No other dollar.  I am not working, I am not teaching.  My work to do was worthy, wonderful work.   I had much to contribute, I like to believe I still will. 

And there.  Another day. My children.  Growing older, stepping out beyond yesterday and into a tomorrow I need to be part of. 

Another day; my husband.  Carrying burdens too heavy even for his broad shoulders.  Pushing on.  I want to help him more, be there for him, too. 

This life is valuable, doctor.  Do you see me? I am your impatient patient.  The one who would rather not be a patient at all.

Should you come into my home and observe my life, not just my disease progression, you might try to take some action.  You might begin to listen.  You might think us worthy of that much. You’d be welcome. 
Doctor, get up from that chair. Get down from that high horse.

Another day came around.
Another day with no more answers,
no direction, no help.

And another day came around,
and another patient wrote to me.
Can you help me? 
Can you help me find a pathway through?

Can you make them see,
Me?

Another day and I am counting
More ganglionic death within my frame.
Less function, more frustration.
And you, Doctor, barely know my name.

Another day, but are you counting?
do you record the way I do?
do you read the publications
scour the boards to read the news?

In another country,
I might be getting something done.
I might be making a kind of progress,
I might be a …’lucky’ one.

In another percentage band,
my life might take different course.
In another doctors hands,
my life might matter

as much as
yours.

 

 

8 thoughts on “The Impatient Patient”

  1. Rachel, I just love your blogs. Especially this one which really struck a nerve with me, which I know so many others struggling with chronic illness will relate to as well. It’s tough feeling forgotten, or becoming lost in the system or being told you are too young to be so sick. Thank you so much for writing on behalf of so many of us and giving us a voice xx

    1. Aw, thanks Lisa, I love that you love these posts! I don’t love that you understand this first hand, because that means that you are struggling too. I hope you found some sunshine today.
      Arohanui
      Rach x

  2. Hi Rachel, all I can do is commiserate. I know how you feel, at least to some extent.

    You mention “in another country I might be getting something done”. What sort of things do you think you could have done if you were elsewhere. And where? Australia? USA? Have you considered reaching out to the community for help getting to those other countries? Or a different doctor here in New Zealand?

    1. Hi Lesley, my doc has so succinctly put it: “there is no one in New Zealand who knows anything about this”. I am keen to talk to any doctor that has an interest in eliminating the possible causes and exploring treatment pathways.
      In a perfect world, if I could, I’d go see the leading doctor in the USA for autoimmune dysautonomia. He’s a neurologist in Texas and has spent his whole career, from back when he was doing undergrad researcher, looking at ganglionic receptors and autonomic dysfunction.
      I don’t know how to do that, but I have been making enquiries. I just don’t feel I can rest until I have crossed the treatable possibilities off my list. If something can be done, I owe it to myself and my family to find out. I’ve had my bloods done at the Mayo. I fall into the 50% of patients with pandysautonomia who don’t have a positive antibody picture in keeping with autoimmune autonomic ganglionopathy. Yet, many of the 50% still respond to immune modulation therapies. Immune modulation therapies are serious and hard to get authority for. IVIG and Plasmapheresis, for example.

  3. another “food for thought” post, Rach. Does Dr X view the bog? Perhaps you should send him the link along with all your other links
    Love S

  4. Oh Rachel I feel for you! Definitely think Dr “X” needs to be sent a link to your blog! In saying that he’s probably not interested any way!!!! Is there anyway this US Doc could come to NZ? Given there are more than just you suffering from this awful disease! If anyone could make that happen I know you could! Love & light coming your way xxxx

  5. Oh Rach-my mum and I experience this scenario constantly. Just today I sat listening to my mum who is so desperate for a doctor to take notice of her unbearable, dehabilitating pain and follow up with xrays, MRI’s and tests. She keeps changing doctors and gets the same useless response from all of them that you’ve so articulately described.
    I personally, am so fed up with so-called specialists having no empathy, no answers and no ideas for pain management beyond medication. They charge ridiculous amounts of money and yet we leave their surgeries no better in return for the payment we’ve parted with.
    I love reading your blog entries. They are so, so cleverly written with heart, passion and wit. I love that you are brave enough to reveal your struggles and those of us who know and love you, totally respect your raw openness and vulnerability as well as having a giggle at your satire! Keep writing!

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