Saturday, April 23, 2016

Living with Chronic Disease: If you can only do three things

Recently, several caregivers and/or friends talked to me about someone who has a very serious chronic and/or life threatening condition. Their primary request was for any new information that could lead to a cure. Without belaboring why I focus on healing versus cure, I recognized two very important things:

a)  In our “can do” society, where it seems like there is a pill or app for everything, the idea of "chronic" is difficult to grasp. Consequently, this can lead to a lot of anger, frustration, conspiracy theories and more.
*  b) Due to the abundance and overwhelming information available, people want very short and immediate information that they will understand.

With these two ideas in mind, her are three things that those affected by chronic and/or life threatening conditions should do:

11. Find a medical team you trust and can work with.

22. Join a support group (on-line or in person): Places to find a support group include: local newspaper; clinic or doctor’s office where you receive care; condition specific organizations; asking friends and family; your place of worship; or local library. Find friends and places that can support you emotionally, and where it is safe to talk about your health issues. Be sure to consider AA, Al-Anon, church group, or even a social club. On-line resources.
33. Share your data and follow the research. By sharing your data, through websites like Patients Like Me, or disease specific sites such as MyLymeData or Association of Cancer online Resources you can compare treatments, symptoms and experiences, chart your progress and help find effective treatments. Check out Being an E-Patient for more information on this topic.

Healing implies the possibility for us to relate differently to illness, disability, even death, as we learn to see with eyes of wholeness. Healing is coming to terms with things as they are.

If you can do more, consider the following:

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