Knowledge is power and as patients, we’ve learned that our lives and livelihood often depend on it! We spend far too long being told nothing is wrong when we're struggling to even hold up our heads. Our pain is dismissed as being an “incidental finding,” or worse yet, when they deem it a “conversion disorder” and something better fixed by a therapist.

The objective of this community is to provide a safe place for patients (and their support systems) to share and learn from one another, as we work together to help one another through all that we endure.

Worth The Fight (WTF!) has been on social media for many years now. With more than 8k members, we have found that it takes a determined community to bring about the changes that we need!

Our private community is now open for registration! Please be patient with us as we make it all we dream it to be for patients and their families!

The odds are heavily stacked against us, but we can defy some of those odds! While we can't control everything going on with our bodies, we can learn to control that which is still within our control in order to change where we're at! We cannot leave it all to our doctors, far too many of them don’t understand what we’re facing anyway (they think it’s all psychosomatic).

Most of us have spent years (or decades) complaining about symptoms only to have it fall on deaf ears by those we love and trust. Overtime, that can wear out even the strongest and most confident amongst us. We tend to stop believing what we feel to be real, and it ultimately changes the way we see ourselves and our attitude towards everything pertaining to us. We need to turn our perspectives, so that we see ourselves as worthy and capable of more.

We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive and healthy perspective. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.

Learn what other patients have found to reduce pain and improve their quality of life through diet, exercise, and stress control.

As Chiarians, we are all too familiar with the obstacles and difficulties we face in finding the answers, help, and care we need. Self-advocacy is a necessary means of survival.

From our right to competent medical care to our rights for proper pain management options, we cannot expect people to fight for our rights unless we are first willing to fight ourselves.