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.

 

a Good Girl…

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The kids have been writing their wish-lists. I love the funny things they still think are realistic. I love that they still dream pie-in-the-sky christmas dreams.  That they pretend to not believe in Santa but still harbour hopes they won’t admit to. I have been ever more grateful for the way online shopping helps people like me make Christmas dreams come true.  How did people with health challenges manage before the internet?  I just can’t imagine.  I am mindful that gifts aren’t everything; there are other ways to show love, but oh my goodness I adore Christmas gift giving.  I love choosing things and the thinking about how tickled each recipient will be over each gift.  But the crazy commercial nature of it all has me thinking about the non-material things I wish for this Christmas.

Do you have a grown up Christmas List?  Maybe mine is a bit pie-in-the-sky, but if there was ever a time for dreaming big, it’s Christmas time…

For my family, I wish time spent in contented company with one another. Making memories and enjoying the benefits of our antipodean summer Christmases.  Beaches and picnics and bare feet on grass.  I wish ice creams and kite flying and movie nights with fish and chips.  I wish them rest and recuperation from their busy year and time to get excited about the new one. I wish for them, the ability to see how lucky we are.

For my friends, I wish good self esteem and inner peace.  I wish recognition for their efforts in whatever field they’ve been endeavouring this year.  I wish them health and body vitality and the ability to look out beyond their daily grind to the beauty all around us. I wish them calm and joy and love.

For my community I wish greater connections, stronger ties between the people we pass on the street.  I wish the safety net of good medical care and provision for timely mental health services. I wish clean streets and strong infrastructure.  Clear water and fresh vegetables. Room to grow and mountains to climb. The ability to see the beauty in each person they connect with and especially, their own significance as part of the whole.

For my country I wish for a burgeoning sense of value in what we have, right here in this beautiful little nation.  I wish wisdom for the government and gratitude from the people.  I wish for strong safety nets to catch the needy and better programmes to build self-determination and strength among the marginalised.  I wish for compassion among the people for one another, personal accountability.  And kindness.  More kindness in this country.

For the world… sigh.  I wish someone would call a stop to the madness.  We are all people.  People should care for each other, not kill each other.  Our similarities are far more significant than our differences. I wish we could look in the mirror and see our neighbours instead of ourselves.  I wish we could gaze at our children and see the faces of our enemies children. I wish we could stop the violence because it makes no sense.  The problem is so big because no one seems to think the answer lies within themselves. If you can change your heart to include the people you feel like you should hate, if everybody could do that.  It would be done.  I wish we could all live and let live.

Is that too much to ask for, Santa?
I think I have been a good girl…

 

Kia Kaha. Stand Tall.

Today is International Day of People with Disability.

It’s a day for celebrating difference, for acknowledging ability.  It’s a day for shouting out achievements from the rooftops.  What a brilliant group of people live in the category of ‘People with Disability’.  As I get to know more people in this new community of mine, I am staggered.  I wonder if you are aware too?  When was the last time you interacted with someone of differing ability?  Did you feel strange? Did you wonder about who they are?  Did you get beyond the difference to see the similarities?

I was walking through a group of parents at my son’s school the other morning.  I have only been walking with a cane this year, apart from it, my disability is largely invisible.  I have a neurological disorder that makes it difficult for me to stand for long.  Getting around is increasingly more challenging. I use the cane for balance and it’s built in seat as somewhere to perch when the dizziness overwhelms.

“MAKE WAY FOR THE DISABLED LADY!”   my son yells out, like a town crier.  I cringe.  I don’t like to be looked at, at the best of times.  I felt at once awkward and neon lit.
“Zed!” I admonished.
“What?!”  He looks at me, his eyes wide.  He grins.  
“But you ARE, Mum! I’m just getting them up to speed”.

I look at his face and think about how simple it all is when you are seven. How simple it really should stay.  I think about how adulthood and social stigma and self-consciousness and the media and social norms all teach us about what
“disability” is.

It’s time for a different conversation.  It’s time for me to join my son in getting people up to speed.  I spent last Saturday night at a function for the Be.Accessible Movement It’s the first function I have been to where I felt able to sit when I needed to, able to be real about how I was feeling without it dampening the mood in the slightest. There was room in that function hall for difference.  No questioning looks, no awkwardness.  I was not ‘other’ but, ‘another’. There were genuinely fantastic people to meet, fast connections; no barriers.  It was a revelation to me.  I wish that all of society could function this way.  And I believe it can.

If I can make a difference to you, if you can make a difference to someone else.  If making a difference is simply in noticing the sameness within difference, we’re on our way.

This beautiful verse crossed my path yesterday.  Perfect timing for this International Day of People with Disability.  (FYI:  the Kahikatea is a wide branching New Zealand native tree).

By Henry Melburn

E tu kahikatea
E whakapai ururoa
Awhi mai awhi atu
Tatou tatou e, tatou tatou e

Stand tall like the kahikatea
To brave the changes
Embrace one another
We are one together

Not vain the weakest, if their force(1)

I made this facebook cover this morning (feel free to use it for your facebook today).  I thought Homer’s words express what I am trying to say.  There may be differences in the ability of the “disabled”  that people consider to be weakness.   But there are strengths beyond belief. There is value and diversity and an untapped resource of brilliance in this community.  We need to start seeing all diverse groups within our society as part of the whole.  Let’s unite en force:

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Celebrating difference and acknowledging ability and making it possible for everyone to just, be. 

And the Liebster Award goes to…

liebsterawardI have a friend from my foray into the blogging world.  She’s amazing.  I remember the first time I read her blog being so impressed. I thought: she really knows how to tap into the big issues while remaining as personal and familiar, like a friend you’ve chatted with your whole life.  She has a global heart, a peaceful heart, a kindness driven, sensitive heart.  And she writes so well. I’ve been a fan right from the start, so it was a big deal when I got a little message from her telling me she has nominated me for a Liebster Award!  I’m feeling the love.  Thanks so much Sarah.  You can find her wonderful blog here:  Sarah’s Heart Writes.

What exactly is this Liebster award all about?  I asked Sarah, this is what she wrote about it:
“This is an award that appears to have no concrete origins but is said to have started in Germany, hence the name Liebster which loosely means Dearest or Nicest or Kindest or Sweetest (and a few other adjectives to boot including boyfriend!).

It should be said that you don’t have to accept the award. If you don’t want to pay it forward, you don’t have to, you can gracefully decline the award, it is up to you. But if you do accept it, the idea is that you pass on the love. And I do love to spread it around a bit.

The rules have changed a bit over the years it seems.  The idea is that once you have been nominated and accepted the award, you then nominate a further 3 to 5 bloggers whom you think deserve the award.  They then nominate a further set of bloggers, posing their own set of questions and so the Pay-It-Forward thing goes on”.  Sarah Doxey Cox

I am so excited to nominate some bloggers from my little community of Dysautonomiacs.  These women have become my friends online because we all share the challenge of wonky autonomic nervous systems.  And they also blog!  Without exception they are all awesome, brave, funny, clever and interesting.  I give you my nominees:

Michelle from Living with Bob
Michelle and I have matching thumbs.  Similar knees.  A shared love of poetry and chocolate.  Among other things!  Michelle has been my greatest source of dysautonomia laughs, my biggest provoker of tears, a brilliant sharer of great music and a scientifically sound resource for all my medical wonderings.  I was introduced to her blog a few years ago by Lauren Stiles from Dysautonomia International.  Michelle led me to my online support group. Thanks Michelle, you are the font of all knowledge and the best zombie I know.

Erika-Louise from Chronically Dys-Functional

Erika has been in hospital, more than out, over the last few years.  She has one of the most severe cases of Dysautonomia in Australia and possibly the world.  She achieved a huge thing just last week, standing for one minute.  I am so excited about the progress she is making, and so thrilled that she shares her thoughts and wisdom with us all on her blog. Erika, you beautiful, brave girl.  Just keep going.

Ashlee from Ramblings of a Chronically Ill Teen
Ashlee is articulate and straightforward.  She faces a huge health challenges in addition to the challenges of being a teenager.  Recently she’s been thinking about what to do at the end of secondary school.  Can you imagine facing those decisions knowing that your chronic illness is going to be with you the whole way? That you’ll be juggling study with hospital admissions?  I like the way Ashlee writes, I like how she unflinchingly shares and spreads awareness, that she never misses an opportunity to advocate for people with Dysautonomia. You’re great, Ash.

Kendall from The Potsy Princess

Kendall is one of the sweetest people I have ever met online.  Even in the midst of terribly frightening surgery and difficult rehabilitation, Kendall finds time to support and encourage everyone else.  She likes quirky things, she has a darling boyfriend, and a body that rarely gives her a break. She is a rarity in more ways than just the ways defined by illness.  I love her attitude and the stoic way she approaches life. And I like her writing.  This blog is a brand new baby!  Aw!

Stephanie from Insight through Illness
Stephanie is a compassionate, deep thinker who has weathered the storms of her illness with such grace and positivity.  She shares her insights and provides a community space for people with Dysautonomia at her website.  She’s been struggling a lot lately.  Hope this Liebster award pops a smile on your dial Steph. Can’t wait to see the award up on your site.

We are all antipodean.  Michelle’s been blogging for a while and is our beacon of inspiration.  The rest of us are newbie bloggers, just starting out.  Please, do go and say hello.  Tell them I sent you. Show them some love.  Although we have more time for blogging than most healthy people, it is still a struggle to get the words out, manage the ‘back end’ and deliver regular content when you are sick.  Blogs are a labour of love; I know they’d appreciate some reader love!

I haven’t written any questions for them to answer as per usual Liebster protocol.  Cos I’m a rebel like that.

Thanks for the award, now it’s your turn, girls!  Who do you nominate?

Taking Stock


Screen Shot 2014-05-25 at 12.54.46 pmI’m doing a course on blogging and writing (just in case you missed my many references to it).  I am loving the course and determined to do all the assignments, because you can take the girl out of girly-swot but you can’t take the swot out. Which just means (if you are not a kiwi) that I am a big fat nerd.

So here it is.  A list of what is happening in my world at the moment.  If you are a girly-swot too, who loves lists and wants one of your own, join in! I’d love to see your list, too!  I’ll add the empty list at the bottom of the post so you can copy and paste it.   Message it to me over on:
https://www.facebook.com/chronicillsofrach  or add it to the comments below.

Making: havoc of my kind

Cooking: lots of slow cooker, save-my-bacon meals for six.  But last night(!) an inspired-by-Rosie, pulled pork and noodle stiry fry with lots of fresh veggies and handfuls of coriander.   Oooooh… delish.  Even if I say so meself.

Drinking: tea!  Wanna cuppa?

Reading: Half The Sky, Let me Sing You Gentle Songs, the Dovekeepers…
(well, in truth, I’m just looking at them in my ‘to read’ pile and actually reading lots of blogs!)

Wanting: an ugg onesie.  Have they been invented yet?

Looking: at the ‘insides’ of lots of amazing heads in the blogosphere

Playing: over and over in my head,  a conversation I had recently with my doctor

Deciding: that expanding our family was the right thing to do after all

Wishing: I had enough energy for my expanded family all of the time

Enjoying: blogging with Pip and the Pipsters

Waiting: for the rugby to finish so hubster can join me in sweet slumber

Liking: (“blog crushing” on) Michelle from Living with Bob, Annette from I Give you the Verbs and Kellie van Meurs from To Russia with Hope.

Wondering: if Zed will be okay in his first TV audition next week

Loving: being challenged by my BLOG WITH PIP course!

Pondering: the sounds coming from down the road… is that joyous celebration or a fracas?

Considering: whether we should investigate that...

Watching: BBCs ‘Hunderby’… crying myself silly with laughter. It’s a spoof period drama/ comedy.  Think Jane Austen, crossed with The Young Ones.

Hoping: I will wake up in time tomorrow to wake Bee for her sunrise photography session with the other Be.

Marvelling: at the wondrous coincidences that occur in my life, all the time.  You too?

Needing: some oomph.

Smelling: Lemons from the Chilean Pisco Sours Hubster made tonight.

Wearing: Lazy Bones PJs (Australian genius in a pajama)

Following: suit.

Noticing: that my blog is a bit different to what I thought it would be. Less informative so far, more impressionistic.  What do you want more of?

Knowing: I am so lucky to have this beautiful big blended family.

Thinking: how I have always been happiest in International communities and that is why I love social media

Feeling: happy tired instead of sick tired.

Admiring: the character Bee showed at riding today when she pushed through her terror and made the jumps that she thought she couldn’t get over.

Sorting: our finances.  I’m in charge of them for the first time ever!  eeeeeek!

Buying: Star Coins for StarStable (I know.  Ridiculous.  And I am in charge of finances?  Help.)

Getting: closer to happy more often.

Disliking: NZ being so small and at the bottom of the world, so far from some of the best Dysautonomia specialists.

Opening: the doors to the things I have needed to express for a long time.

Giggling: at Hunderby’s naughty bits.

Feeling: affirmed and supported and loved by people I know and by people I haven’t even met in person. It astounding how good that feels.  I have a community.

Snacking: I’m not!  Gold star for me for the last five minutes of no snacking.  But just by the by, ‘snackage’ is quite possibly one of the loveliest types of eating. Closely followed by dessert spoon lingering.

Coveting: The writing lives of Naomi Bulger, from ‘Naomi Loves’ and Pia, from ‘Woven Words’.

Wishing: I had a magic wand.  There are lots of places I would wave that thing.

Helping: with my words. People are finding my words useful and I really love that.

Apologising: for not making links yet for all the lovely people and blogs mentioned above. That’s a bit beyond me this second. I will amend that on the morrow (check back here and get clicking)!

Hearing: a song on a loop in my head:
“Every little thing is gonna be alright” (after a little meme glued it in there).

Here’s the list.  Your turn!
Making :
Cooking :
Drinking :
Reading:
Wanting:
Looking:
Playing:
Deciding:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving:
Pondering:
Considering:
Watching:
Hoping:
Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Admiring:
Sorting:
Buying:
Getting:
Bookmarking:
Disliking:
Opening:
Giggling:
Feeling:
Snacking:
Coveting:
Wishing:
Helping:
Hearing: