Monday, 26 September 2016

Same Song, Second Verse - An Active vs Reactive Patient

At first when I was diagnosed with rheumatoid arthritis I knew nothing about it beyond what I heard from my (busy) doctor and what I read in a Chatelaine magazine article one year.

Learning how to find reliable information about my own health was complicated by having to google many of the terms I found. At first I thought that I might have a lot of the complications I read about - that was the way I learned what the doctors call "watchful waiting". After a few months with no changes it became obvious what I did not have to worry about. 

This access to the internet has meant we can all find information of any kind, from basic up to scholar or specialist level. This easy availability of information has leveled the field and is changing our traditional ideas of authority.  

Doctors are no longer the only source of facts and ideas about health. Now more patients than ever are comfortable asking informed questions at their appointments, where previously they might have been outside the exam room door before they had a chance to ask their doctor important questions.

The revolving door of healthcare

The individual empowerment that results from knowledge has changed my life in a good way. At the onset, when I was diagnosed I did not do much to help myself for and this lasted about 15 years. I was depressed and anxious and found it hard to deal with the life changes I was forced to accept.

It was encouragement from a physiotherapist and a doctor that started me off on a more active track and now I blog and am active on Twitter. All of those years of experience living with RA had left me with valuable information about how to deal with issues like finding a good team, the benefits of social support, orthotics, physiotherapy…it’s a long list. I wanted to share what I knew so I started to blog about chronic disease. But you can’t just blog – you need readers so I started to tweet links to research studies about Rheumatoid Arthritis (RA) that I thought were important.

As I met more people online I started to see opportunities to attend conferences and webinars and I realized that my opinions – that the opinions of patients - have a lot of value in healthcare. Knowing this made me feel empowered and engaged. Attending Medicine X was a huge boost because I found I was not an oddball, just a certain type of a health nerd. 

Now I am on the boards of some patient groups and a member of a variety of committees, from the Community Advisory Committee of my local hospital, to government bodies and also research teams. Even though I loved my previous job, this is even more rewarding.

Being involved with working for changes in the health care system has turned into a real and meaningful passion.  It is great to have the tools to make a difference and to encourage others to get involved.

I loved this acronym I found about learning. SML stands for “self-managed learning”– you can choose your preferred way to learn from a variety of resources like video, webinars, articles and scientific papers. We can all choose to learn at our own speed and level, and patients who learn more often do better in the long term in many ways. 

One that is important is social support. Patient experts and patient groups are good sources of knowledge.

Patient Support Group

This blog is part of RA Week. To see more blogs on this topic click here


  1. SML, I love that! It is so important. Recently I had a little worry that I might be adding on to my RA diagnosis, but there was a calmness knowing that if that was the result, I would be fine with it because this time around I would have a whole community of people with experience to turn to. Patients are so important in sharing their story. And, the new scary diagnosis didn't pan out. Yay!

    1. Thanks Cathy. Those gifts from the RA that keeps on giving are scary. I'm glad your new scary problem is not going to make your life more difficult.

      It makes such a big difference to have people who know the ropes and can give useful and practical advice

  2. I'm always amazed at how the times have changed when I was first diagnosed, over half a lifetime ago. As you say, patients are so much more empowered today. That's a good thing!

    1. It's wonderful that things have changed. I just don't know why more doctors don't become rheumatologists when the job must be so satisfying

  3. I love the level of support I find online. So many times I have wondered, do others feel this way or that? Then I get to looking around the internet and sure enough I find we share the same space.

  4. I was thinking that RA Blog Week needs a support prompt but reall I suspect that Friday will cover it, when we talk about other blogs we have read.