Going Up

oing up

For the chronically ill there are a lot of visits to the hospital. Not just admissions, there are also visits to specialists in hospital outpatient clinics. I am very familiar with the Level 6 clinic at Auckland Hospital.  I’ve been going there for years.  Gastroenterology, General Surgery and Immunology all run their clinics from the same place, the pathology rooms are just down the hall. The neurology clinic happens just upstairs. On a regular rota I have been seeing all of them. And today, I went for what I hope will be the last time. I know I can’t expect it will be forever, but why not hope?  So many of my wishes have come true lately, so many lucky things have been happening for me.

My immunologist is a quiet-spoken man. I’ve written about him before, he is a superhero, that kind of doctor who restores your faith in the medical system. After he invited me into his office he said in his measured voice “What’s been happening?”

“LIFE!” I enthused, “I’ve been busy living life!” His lips twisted in that lets-be-scientific way and he asked a different question, followed by some more. He looked at my file, shook his head and smiled. We discussed how strange (but welcome!) my remission is. He used a word not many doctors use: “miraculous”. And he used it without even a hint of tongue in cheek. He explained that they had searched high and low for an objective test that could unequivocally demonstrate the difference in my condition from before, to now. They just can’t explain it. I observed his wonder at my remission with mild surprise. I forget sometimes, what a different person I must seem to him, this new life fills me with joy, but I think the shock of the change is fading for me. Today, I’m wearing bright clothes, coordinating accessories and my face is fully made up. Even my nails are done, thanks to my new side job. The Rachel he met a bit more than a year ago sat slumped in the same chair, colourless, exhausted and nearly defeated.

“You were so symptomatic…” he reflected. “And look at you now!”

He agreed that I don’t need to attend clinic anymore. And that means no more Auckland City Hospital!!! I’ve never been so happy to farewell someone.

“Come back if you need us again, you may need to have another course every few years, but hopefully not,” he smiled.  Then he stood and said “…well then- give me a hug!”.  We hugged, patient and doctor. We hugged in that slightly awkward but full of feeling way, and I hoped that flowing through my arms he felt my gratitude. I stumbled over my words, something about wishing there was a way I could adequately…
“Just keep doing your good work” he said.

I grinned at him, waved, and walked out of that clinic.  Past all the chairs where people less lucky than me sat, round shouldered, weighed down by their health burdens. Past reception, where my file would be handled for the last time. Through the foyer, past the best barista in Auckland, who has served me more coffees while I’ve been in my hospital nightie than in my street clothes.

By the time I reached the carpark lifts, my heart was already soaring.
The elevator doors opened “…going up?” asked the man in the lift.

“I believe I am” I smiled, stepping inside.

4 Ways to Better Medical Literacy

4 ways to better medical literacy
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A couple of years ago, I was at a function.  I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia.  Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions.  😉

This guy, like many doctors, was a very intelligent person.  He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well.  Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients.  The term is not something I had encountered before, or heard from others about.  The attitude he spoke of was familiar to me, but not the expression.  Have you watched a doctor ‘think’ this before?
A patient who talks the talk? Who has been googling? (insert eye roll)  Could it be a case of somatisation?

Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosematic illness.  Hypochondriasis. There are a range of psychiatric disorders which follow this pattern.  Sadly for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own.  Dizziness, chest pain, abdominal problems.  This is why for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts.

Recently, the term ‘medical literacy’ came up in my readings.  It reminded me of that social encounter with the doctor and his word ‘medicalised’.  I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon to the average patient.  We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on.  Especially when consultation times are squeezed, fast forwarding through all the translations between doctor speak and layman’s terms, is practical.  Also, have you noticed how many letters there are in medical words?  Phew, acronyms were invented for a reason!

We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace.  So much so, that new members take a while to learn the lingo.  For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions.

In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term).  The Ministry of Health’s report into health literacy in this country defines it as:
“the degree to which individuals have the capacity to obtain, process and understand basic health information and services in order to make informed and appropriate health decisions”
(Kickbusch et al., 2005; Kōrero Mārama, 2010)

Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way.  Literacy really means being able to make sense of information in context.  For people without science based or medical degrees, it can take some time!  For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis.  My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart.  My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information.  There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas.  I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here.  It might relate to my condition, but not to what is possible for my treatment.

All of these factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness.  Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care.  Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’.  Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health.  This is a key success component to getting the help you need from the professionals out there who are qualified to help you.

Here are four ways you can improve your health literacy:

Ask questions
Don’t be afraid to ask.  A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference.  I didn’t.  It’s a med school 101 reference.  I was confused, so I said “Can you explain?  I don’t understand …Occam’s what?”.  Occam was a monk a very long time ago who put forward a problem solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it).  He was explaining why, even though I had recently discovered I have a high titer (often present with another auto-immune neurological disorder, Stiff Person’s Syndrome), the one he thinks I have (Pandysautonomia) is more likely to be what is wrong with me.  Asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants.  In my experience, most doctors like to be asked questions, particularly for clarification.

Read all about it
Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis.  Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition.  They will have access to information too.  Read it all, even if you don’t understand it.  If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition.  If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading.  There is a great deal of pseudo-science out there that can trick unsuspecting readers.  Run it by someone with more knowledge than you before freaking out.  😉

Find your Tribe
Facebook and the internet abound with groups, forums and news boards  that bring people with the same conditions together.  Look for groups with a strong set of user guidelines.   Read them and see if you agree with their code of conduct. There are some really awful groups where bickering and mindless trolls like to stir the pot.  Avoid those.  If you find yourself in one, leave.  There are much better, well run groups of like minded people out there.  It took me a long time to find a group that I consider to be responsibly administered.  When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood.  Finding your geographically relevant tribe is good too, because then all of the information will relate to your experiences.

Delve into your Data
Get hold of your medical records.  In New Zealand you can request these from your GP and your District Health Board.  Organise them into a file and refer to them. Examine your results and look for patterns.  Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor.  Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition.

Why does it matter?  If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary.  Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower.  Not sure about that?  This is what the Ministry of Health had to say about people with poor health literacy:

I found this at www.healthliteracy.org.nz
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The only person who will ever care about managing your health plan properly, is you.
Literally.

 

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.