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:
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
The only person who will ever care about managing your health plan properly, is you.