How can I become an advocate for a chronic disorder?

Here are some ways to become an advocate for a chronic disorder:

1) Pick a topic you are personally riled up about. For instance, the proposed criteria for diagnosing fibromyalgia or the criteria you want to see used from diagnosing ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), the lack of insurance reimbursement for therapies considered alternative, a name change, the right to have pain managed reasonably or the politics of getting the “right” research funded.

2) Share, share, share. May our spirit fill us with understanding of victory and defeat, the gift of collaboration, the wisdom to choose the right path, and inspire us to hope.

3) Respect your limits. I set a timer, which keeps the respect for my limits in check.

4) Set achievable goals, avoiding the pitfalls of burnout. Do not set out to change the world, set out to express your personal thoughts, and then change the world. It is the common thoughts of many that make us a community, the stream.

5) Accept your right to be heard. Do not let others intimidate you. Whether it is time, talent or treasure, all are important. A rock pitched into a stream changes its course for eternity, be a rock. It is the common thoughts of many that make us a community, the stream.

6) Accept that you might not always get a reply, but believe that somebody is listening. We never know how far or how wide we are received.

7) Stay organized. There will be days when your brain works in tandem with the keyboard and others when everything is foreign. Important for a fogged brain is to stay on task, decide on key points and make a check list so you can leave and come back.

8) Carry your advocacy into your own healthcare. Let your healthcare providers know what you are doing and if there is anything they might like to contribute. Granted you need the right healthcare provider, if you don’t have one, try to find one.

9) Provide a mechanism for follow up by journaling your advocacy efforts. I fie every advocacy piece I write with the contact information. If I get a response, I copy and paste it into that same word file with the date and time.

10) Remember you are on a team. You are not alone, many choose advocacy as a way of coping with change. Besides the obvious, extend your realm; reach out to co-workers, friends, spiritual groups, or immediate and extended family. Enrich your relationships by sharing the recent research, you might change the way others see us.