Words, Margins, Bias and a Small Whisper

I have a very loving relationship with words. Words and I have been going around together for many years. But sometimes, words disappear and I am left floundering without my dear friend. Lost in the land of no writing. When that happens, I try reading. I listen to music.  I try to be more observant of what is going on around me.  I try to find the ‘muse’. But she is even more elusive than the words.

So I am just going to collate here a few things that have been skipping around my brain, skirting the edges and looking for a place to land. Usually these things arrive for me all packaged up and ready to write, but not this time. So bear with me while I purge to the page, all the little bitsies that don’t seem to fit anywhere in particular.

First and most importantly:  I got my histology results!  The “margins were clear,” which means, no more high grade pre-cancer cells proliferating on my cervix. Woop!  I am so happy about that!  It was such a weird sensation to get that news, because I wouldn’t have been at all surprised if my luck really was that bad. Ya know?!  (I’ve been reading about types of cognitivie bias, thanks to my friend Beth… this type of thinking is an example of negative bias.  You can read about 9 other types here). So I am thankful and happy and so full of the joys of spring over that very good news! That medical terminology about margins… it got me thinking about the margins of society, how some things are marginal, and some people are too.  I thought about how often I doodle in the margins. And I wanted to write a post about that, but I couldn’t make it happen. So instead, a paragraph. The margins were clear. And… exhale! By the way, did you know that Colin Firth is not just rather attractive, he’s also deeep?!  Lookie here…

 

If you don't mind haunting the margins,

During the course of my Be.Leadership programme, we have examined the concept of unconscious bias. All forms of bias. The challenges to clear thinking and accurate assessments of situations. I think being able to identify bias is a really important criticial thinking challenge for all of us. Particularly at this juncture in human history.  My cousin posted this on facebook from the Dalai Lama.  It says it better than me.  But do look also at this article if you are interested in discovering the types of cognitive bias that might be dogging your thinking. For me it is a constant search and stretch as I seek objectivity and good decision making, as a mother, friend, wife, sister, daughter, citizen. I think of these biases as ways of thinking that adjust my sails. My course can be drastically altered and I can end up way off course if I let them influence my thinking without conscious awareness.  Being aware helps me to counterbalance my thinking.

If you don't mind haunting the margins,(1)

So that is me and my jumble of thoughts today.

I also want to tell you, but almost in a whisper, just so I don’t jinx it, that I am feeling really good. Stronger. It’s not what I expected as I begin to wean off the meds that have helped me so much. So… fingers crossed.  I’m going to employ some gambler’s bias (‘it’s a winning streak!’) and let my ship sail quietly into a safe harbour.  I’ll stay there as long as weather permits.

Shhhhh, let’s not rouse the wind from it’s four corners.  Shhhhh…

 

 

 

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.

 

Blue

Feeling blue has been big in the online world lately. People are starting to talk about depression and anxiety, about mental health in general. People are having conversations that may in fact make a big difference to our society. For our terrible suicide rates.   ‘Feeling blue’ can be a twee kind of way to say that someone is sad, low, down or depressed. I’m not going to write about feeling blue today. If you want to read a really great post about that, head here, or here.

Sometimes, in my experience of life with a chronic (invisible)  illness, I think it might be useful if I was actually blue.  If I was a little blue creature like the ones in this Eiffel 65 clip (sorry, but I have had this song stuck in my head), no one would expect me to do the things that a big grown healthy human might be expected to do. They would see at first glance that I am different.  They’d ask me all about it, they’d wonder about my species and scientists might want to study how my body works.  I may be weird, but I am no little blue man.  There will have to be other ways.

October is Dysautonomia Awareness month.

Blue is the colour of our awareness campaign.  It’s a pretty blue.  Although, there is some political disagreement currently, about our ‘exact’ blue…  Apparently the prostate awareness colour is deep blue (all this awareness campaigning can be confusing). Dysautonomia International’s Awareness campaign this year is ‘making noise for turquoise’… but longer standing groups have been using a mid blue for quite a few years.  So I have decided to embrace every blue hue this year.  Brilliant blues. I don’t think we need to have a blue about it.  Let’s just be blue.

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So, how?  I’m not the sort of girl who could pull off a body painting situation, someone might mistake me for a giant jellyfish and roll me back into the ocean.  Nail polish is great, you know?  But a bit last year.  I’ll still be having blue nails for Dysautonomia Awareness month, but Michelle from Living with Bob had a brilliant idea. She told me she’s doing something kind of radical for October.
Inspiring.

I’m going to kind of, sort of …do what she is doing (it’s a surprise), but to a much lesser extent, ‘cause I am a wuss.

This month, to get people asking and give me an avenue for talking about it, I’m going blue too.  I’ll take some pictures tomorrow, as it happens!  I’m also going to wear as much blue as I can, all month.  I am going to pull out last years’ nail polish.  And I’m going to instagram a blue photo every day.  #dysautonomiachallenge   Want to join in?

Cos I’m blue, dab a dee dab a dah.  
I got dysauto-nomi-a…

I am trying not to feel like a big blue failure though.  October is our awareness month. I’ve been thinking about it for months, I even had a friend, the very talented Katie Clausen, do a little drawing for me so I could make t-shirts, but I haven’t even got that together. I bought bracelets to sell for a fundraiser, and I can’t find them anywhere.  Boo.

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For now, I’m going blue!

Awareness month will need to evolve in its own fashion here on the Chronic-ills of Rach. 
Will you be going blue, too?

 

TA DA!  Here’s a pic of my new, blue, do.

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Doing My Bit…

Fundraising for a rare illness is a tough gig.  We don’t have marketing teams or big business sponsorship. There isn’t a Dysautonomia Awareness holiday, although October is unofficially our awareness month.  Down here in Australia and New Zealand, our numbers are quite small.  There are around 400 of us across Australia and New Zealand, that we know of. We do our bit any way we can.  For some of us that means raising awareness by typing our stories out onto the web.  Maybe we host cupcakes-for-a-cure sales or write letters or lobby government with regards to medications access and other related issues. 

My friend Michelle over at the hilarious Living With Bob blog has started up an online donation page to help raise funds for the Baker IDI institute in Australia.  They are conducting research specifically into disorders related to syncope (fainting).  Every Dysautonomiac has had to deal with that scary side of things at some time in our illness. The things they may find in their research are the closest thing to dysautonomia research in this part of the world.  It’s important that we help in any way we can.  But we are a small group of people and most of us are too sick to do fundraising runs, awareness feats worthy of media attention, or much of anything that is going to inspire people to reach into their pockets to raise money for research.  It’s a frustration that perpetuates the invisibility of illnesses like ours in the wider community.  We aren’t well enough to push for attention, but we need it.  So today, I’m letting my fingers do the talking.

Because Michelle has so valiantly taken on the task to raise money for research, and perhaps because she has been feeling too crap lately to get vertical, I felt like it was time we all pull together and lend some support to her fundraising efforts.  Here is a link to her fundraising page.  I will be coming up with some other ways to help Michelle raise money for Dysautonomia Awareness as we draw closer to Dysautonomia Awareness Month.  But for now, I thought I’d introduce you to her efforts.  Maybe you can help.  Maybe you know someone who could help?

Here she is, clicking her Dorothy heels for Dysautonomia.
https://give.everydayhero.com/au/clicking-my-heels-for-dysautonomia

Fall Seven, Get up Eight(7)