Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder. Fibromyalgia-Living with a Controversial Chronic Disease
If you are affected by one of these conditions, there
are things you can do:
• Make sure you don’t have other things
affecting your health: Check with your
medical provider to see if you have other health conditions and/or are taking medications,
treatments and/or supplements that might be making things worse.
• Become an
E-Patient: There are a number of
websites where people can share their stories, as well as their data, in order
to explore treatments.
•
Keep a Health Notebook/Track your symptoms: Not only will this help you be a more efficient
e-patient, you’ll be able to notice trends and figure out what causes flares
etc.
• Invest in the process that will help you heal. Use the handout Healing the Whole Person: Ways
to Increase Well-Being.
• Learn to
evaluate health information: People with chronic
conditions are at high risk for scams and fraud. Check out Scams, Frauds and Quacks to
help evaluate what could be helpful, fraudulent or even harmful.
• Develop a strong support network: If you haven’t joined a support
group, consider doing so 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.
One final recommendation is Consider Mindfulness Based Stress Reduction.
Without going into a great deal of detail, thanks to
advances in imaging and close to 40 years of research into mindfulness based
stress reduction (MBSR), major strides have been made in helping to bring
chronic pain under control, which is an underlying issue with many of the
controversial diseases. To read more about the research being done in this
area, particularly as it pertains to your condition, check out the Mindfulness Meditation New York Collaborative’s Articles Related to MBSR page.
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