Friday, 11 January 2013

Do It Yourself Management of Chronic Disease

We can't manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists.  That's not too likely with a new diagnosis that has an impact on your health.  

                                                 etsy NostalgicLinks

However, to take a guess, even average people don't see doctors much more than two hours over a year.  And that may be a high estimate.  But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself.

There is one thing I have learned on Twitter.  That is that health literacy is the greatest predictor of health. In this context literacy means Grade 8 or better education.  I would go further and say that with a chronic disease you need to be able to do even more - you need to learn the medical vocabulary of your disease so that the appointments you have with doctors are as effective as possible.  Many of us have likely had the experience of having to wait for the next appointment to decide on a course of action because we needed time to educate ourselves on the choices offered.


I have used some formal resources to enable me to manage my RA better.  The first thing I did was take a course called The Arthritis Self Management course (ASMP) offered by The Arthritis Society in Canada.  It took 3 hours a week for 4 weeks and I ended up feeling more confident that some things I was doing were right and in some areas I could do better.  The area that needed most improvement for me had to do with setting achievable goals.


The program that the Arthritis Society offers is based on the Stanford Chronic Disease Self Management Program  I was lucky enough to participate in this program also, as an online course.  Talking to others with problems of their own and finding solutions as part of a group is very helpful.  I found out today that you can take that course free by signing up online for Better Choices,Better Health 

In fact much of the experience in these courses can be recreated on Twitter in terms of support, but not with the discipline and the fixed agenda of these workshops.  They give you a tool kit to help you progress.

At one course I heard the story of elderly lady who had very little mobility.  She built up her stamina by walking around her dining room table and increasing the number of circuits every day. Small steps to success can make a huge difference.



  1. Very important post. You are completely right about the importance of becoming educated patients both for those times between doctors appointments and to better communicate with the specialists that we see. Seems like it would be useful if these courses were tailored to other chronic conditions too.

  2. Thanks so much for letting me know that you liked the post.

    When I took the Better Choices,Better Health course there were people with a variety of health problems like High Blood Pressure, SVT, fibro,stress,chronic fatigue,COPD and diabetes. We all had a lot to offer to the discussion because a lot of life issues are common, no matter what the problem. I think self management is something we will be seeing a lot more of.

  3. Carmen and I did a fibromyalgia course through the Arthritis Society about 9 years ago. There was some good things there, including some of the things you touch upon here. Some I didn't agree with, but as an activist (aggravating? LOL) patient, I'm not always going to agree with the doctors.

    I am surprised when people can't even spell the name of their illness. I realize that I was blessed with a great education, so I guess I am surprised when literacy problems exist at such fundamental levels in the west. If people can't read and write correctly, I worry about their ability to find the information they need. And honestly, you do need to be an equal partner in the treatment. No matter how much doctors know, they can't know how an illness affects a person specifically!

  4. I am impressed that you and Carmen both took the course. It sounds like a wonderful example of the bond you have.
    And I agree with you on the spelling. Some days I wonder if anyone knows how to spell Enbrel. I was shocked also to see the statistics on health literacy being such a contributor to health outcomes.