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
When it is difficult to identify the causes, uniform symptoms and effective treatments for a condition, such as Lyme disease, fibromyalgia, fatigue, multiple chemical sensitivity (MCS), chronic pain or PTSD, stigmatization follows because we fear the unknown. These are not “diseases that people get because they need to have a disease.” Rather they are real, often invisible conditions that can reduce both longevity and quality of life.
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.