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Friday, 21 November 2014

Differences Between Family and Support Group

Today I went to a conference called Health Quality Transformation 2014. It's great to take part in this kind of learning experience, and this is the biggest conference I have ever attended. 

There were 13 break out sessions held in the morning and afternoon and all attendees were able to chose two. Luckily for all they will be appearing on the website of Health Quality Ontario in the next few weeks. If I deduct time for the two I attended that will give me 12 hours of video to watch. It's a sign of real openness. We were also given a copy of the yearly report on how our health system is performing.

Three of us who were patients got together at the end and came up with two ideas. One was suggesting that a patient be added to the planning committee. None of us knew whether this had happened this year but it never hurts to suggest, and we had all felt confident because of our positive reception at this year's event.

The other suggestion we would want to embed with them was that the social support area that many patients experience positively should be explored. We attended the more patient oriented sessions and that seemed to be a topic that did not come up. I was in one that mentioned self-management as an important area in a pilot project in the north, but it was not mentioned specifically.

We have all seen how valuable it can be to have support and advice from peers and others who have similar problems. Of course family and friends play a part, but you just can't replace the helpful advice you get from others who have had similar experiences.

This is a "real" support group, not a virtual one of the type that I mean to depict

Here are some words from Julie that illustrate the difference.
She saw this advice on WebMD.com as part of an article.

They advised: "Explain what RA is like. Giving people the basics on RA is just the first part. More important, explain what it's like for you. You may look the same as always, so people may have no idea what you're going through. Be specific. Describe what morning stiffness feels like. Talk about daily fatigue. Really try to get across how it affects you -- what it feels like when you do certain tasks or what is really hard to do."

She has a large and supportive family and here's her opinion about this advice.
"Do you really think that your family would sit down and listen to you describing how RA feels and remember what you said and be able to identify with your problems?  I don't!  The members on this RA support group do understand and listen because they are going through the same thing.

Even though my family is fully aware of the fact that I have RA and are very helpful and kind to me, I don't think they would want me to recite everything about "how it feels" to them.
Most people think if you Look Okay - then you are Okay.

What do you think?"

Myself, I think Julie has a way with words and I always enjoy her comments. She has also been a big help as I work towards doing a post every day for a whole month. This is now Day 20, so I am 2/3 of the way there.  Yay!




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