Today is the 4th of July, which in the United States of America is called Independence Day. I don’t know enough about the history to talk about it here, but I did spend a bit of time brainstorming the notion of ‘independence’. I was always bought up to be an ‘independent young lady’ and always valued my ability to look after myself and solve my own problems. When it comes to healing, I suspect that approach is not ideal… we need the support of others, and trying to do everything on our own can sometimes make the healing journey harder, longer, and lonelier.
Doing my ‘domino thinking‘, got me thinking about independence versus dependence, which then got me thinking about how we can and do help each other heal, which in turn got me thinking about patient advocacy…
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When I was a child and you went to the doctors, HE was usually sitting on one side of a big desk in his white coat, and you and your mother were sitting on the other side. The doctor would say “this is what is wrong with you, and this is what you need to do to get better,” and you would have no real other option than to say “OK, thank you.”
If you left the doctor’s office feeling unsatisfied for whatever reason, you could organize a second opinion from another doctor (and hope that the first doctor didn’t find out), but not much else. There were few medical books in the local library, and you needed a doctor’s degree to read them. The knowledge-path was basically a dead-end that stopped at the doctor’s table.
Fast forward to more recent times. The last doctor’s room I went into, SHE was sitting beside me, facing her computer, typing away as I talked. She was wearing a shirt and pants and comfortable shoes. If she’d left the room and walked through the waiting room, you’d have no real way of knowing she was a doctor. Moreover, as she was telling me what she thought was wrong, I was able to ask questions, push back a little, perhaps (carefully) introduce the information I had gained online before I arrived. There might be some argy-bargy-banter. One time, not long ago, I remember suggesting to a doctor that my migraine tablets came in a nasal spray, and perhaps she could write a script for that… which she did.
In many ways, for better or worse, the hierarchy of expertise and respect for professional knowledge has been eroded. For those of us trying to get more information, that can seem like a good thing. For doctors who spent years at university and are now drowning in patients’ Dr Google near-death-self-diagnoses, it’s probably quite frustrating.
But even with this blurring, this ability to find out more, even get a (sort-of) second opinion online, I would suggest that a hierarchy of sorts still remains.
Most of the information that we get about what it is like to be sick still comes from the medical profession.
When I went looking for information on what migraine was, what makes it chronic, how I could reduce the pain during individual attacks, or better yet, how can I reduce the frequency of my migraines… I would suggest that 90% of sites I visited were ‘official’. They were set up by healthcare providers, individual headache clinics and companies that sold products to help you heal. They were efficient, information heavy, often repetitive. I’ve got nothing against these sites – I learnt a lot on them – except perhaps, what I wanted most: convincing evidence that I could heal.
I wanted real life stories from real life people to motivate me. I wanted some version of a new friend who would say ‘if I can heal, so can you.’ I wanted someone who said, ‘have you tried this?’ but in a non-pushy, non-judgmental way, with no need to declare Amazon-affiliations.
So, I kept looking, and there WERE a few sites (the 10%) that seemed to have a more personal aspect to them; patient survey results, case studies of former patients, forums, chat groups. There WAS evidence of the real people I was looking for, with real lived experience, who made me feel less lonely. The conversations, however, were often fairly focused on the downsides of being sick, were sometimes disjointed, or had advice that was cut short by wordcount limits or the writer drifting away to do other things.
Part of why I set up this blog is because I wanted to create what I felt was missing – consistent, motivational information that explained what it is like to live with an illness that came from a PATIENT.
Since I started blogging at the beginning of the year, I’ve noticed that there are other people like me out there – patients who are explaining their illness, documenting their healing journeys, advocating for others.
Call me crazy, but I can sense there is a rising tide of patient voices.
I can’t wait for a time when doctors tell their patients “this is your diagnosis, and this is what it means… but don’t just trust me… look up these sites that will tell you a little bit more about how it is.”
There’s a quote I once heard (I think it comes from John F. Kenedy): “A rising tide lifts all boats”.
Here’s hoping we ALL get a lift out of the rising voices of patient advocates!
Take care, Linda x
PS – in the spirit of a rising tide, if you live with migraine / chronic pain, or you help care for someone who does, and you want to write to inspire others to have hope, I’m totally open to guest posts – just drop me a line on the Contact page, and we’ll take it from there.
PPS – the idea of having a virtual-blog-get-together has really taken root in my heart, so I had a look at which countries were the top 6 readers of The Mindful Migraine Blog since it started in mid-January and they were; USA, Australia, India, UK, Canada and Germany (how wonderful!). Then I asked a meeting planner was there any one time that suited all those countries on Saturday the 20th of July (just after my 6-month anniversary), and there was ONE time that wasn’t great, but had nobody asleep:
So, in the name of all things communal – I’m calling it – Saturday the 20th is the Inaugural Mindful Bloggers International Zoom Occasion (IMBIZO is a Zulu word which means ‘a community gathering’ – I hope they don’t mind me borrowing it!). I’ll send out a Zoom address closer to the date and I hope that a few of you can make it and get the opportunity to say hello to each other!!
AMMENDMENT – because I’ve just discovered most of the US is earlier, not later, in their time-zones, and would have to get up at 4am to attend, I’ll do TWO meetings – this allows New Zealand to join in as well:
The Mindful Migraine 
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