Over the past couple of months we have been working
with a
small group people
experiencing chronic health conditions and learning from their
experiences with using the tools on the website. We are developing
a new journey to capture the stages or the experience of having a
chronic health condition. The group is sharing stories and examples
about their journeys with chronic health conditions. We are
identifying issues and tools that will be helpful to others with
chronic health conditions to include on the website.
The following examples are from our group working on the next
phase of thinkaboutaourlife.org: the journey with a chronic health
condition.
Kirk and Jennifer
Kirk and Jennifer have used several person centered thinking
tools
found on the website over the past few years. Kirk is dealing
with neuropathy that causes chronic and debilitating pain as a
result of having type - 2 diabetes. Jennifer and Kirk developed an
example of a health support profile that describes the specific
supports Kirk needs to prevent health problems, deal with bad days
and when he has severe pain. (click
here to view).
Bill
Bill used a few of the tools on the website to think about
his experience with a chronic illness. He says he found the
tools helpful to get some of the things he had been thinking
about down on paper. He has a diagnosis of chronic liver disease or
cirrhosis. He used the following tools: hopes and fears, good day
bad day, working /not working and developed a summary of what is
important to him and support he needs in his Supporting
Bill page." 
It is important to Bill to enjoy his
family, work on projects that bring out his passion and hear live
music often. He also lists the support he needs to be proactive in
managing his health which will help him stay healthy and out of the
hospital.
One of the things he struggles with and discusses in his
examples is having medical professionals and others make
assumptions about how he ended up with cirrhosis.Often people
believe he damaged his liver from abusing alcohol.
He
overheard one nurse telling another nurse his cirrhosis was from
long term alcohol abuse - as if this was a fact written in his
chart - neither the cause of the cirrhosis nor it being in his
chart are accurate. It is difficult to deal with having a chronic
health condition let alone dealing with how people react to you and
treat you based on assumptions they make about you. Bill says he
has periods of excellent health in the midst of dealing with his
chronic liver disease!
Click here for more examples developed by Bill.
We plan to have the next phase of Think About Your Life designed
and live later this year (hopefully in the not too distant
future!). In the meantime, if you like use the current website to
think about chronic health conditions and cancer. We would
appreciate hearing any feedback or stories you have to share!
For additional examples of people
with chronic and long term health conditions using person centered
thinking tools click here found on the HSA website.
Amanda George
Return to thinkaboutyourlife.org
