For those of you still with me, thank you. My situation has changed, and I can return to more regular updates. But more importantly, I've been given a golden opportunity to finally give back and start serving the community that has helped see me through my darkest times. It's been through grass-roots community efforts that we have been able to help one another. And now those grass-roots ventures have a chance to team up with a company that wants to listen to us and our needs, and find a better way for our doctors to help us, and not give up on chronic cases like ours.
If you're anything like me, you've been fired from a doctor and given that awful send-off: "I'm sorry, we have nothing left for you." It's humiliating, shocking, and can send you into a talespin of self-defeat. But I've learned through my research and experience that when we hear something like that, it has nothing to do with us and everything to do with the doctor's unwillingness to deal with a "heart-sink case." They see no way to make us better, so they give up and hope that some other doctor will take over. But that's incredibly short-sighted: there's still a person in there, who has to live through all this, and it's really difficult not to take it personally when your doctor fires you for you disease. We wonder what we did wrong, when it has nothing to do with us at all and everything to do with the circumstance in which we're trapped.
And studies on happiness show that it's not the chronic illness that makes us unhappy... It's unmanaged symptoms. "If you have manageable health problems, it doesn't really matter [to your overall happiness]." (At the 3 minute mark http://www.ted.com/talks/stefan_sagmeister_7_rules_for_making_more_happiness.html). What does to happiness, as that video goes on to show, it a person's connectivity to others, and it is exactly that connectivity that gets obliterated when a chronic illness strikes.
But I think there's hope. I think if we can show doctors that, while they may not be able to win against our disease, they can still improve our situation so we can be happy despite our disease, we'd have a real winner on our hands, one that could revolutionize the treatment of people with chronic illness. I think if we can present doctors with a tool that gives them the ability to treat our symptoms more successfully, we can help them to help us get better.
I was recently contacted by a health start-up called HappyHealth. They want to work with me in addressing the needs of patients and doctors, improving outcomes where other companies don't even want to try. But they don't know the secret that we do. And that is, if we can make a difference for folk like us, then everything else is a cake-walk. I know that if we work together to make this happen, we could change the world into a better place.
You can help too! We're looking for people with chronic illness and an opinion to share their thoughts on how HappyHealth can best serve YOU. Every other professional health website/app out there has been written by healthy people for sick people, and they often completely miss the boat on our needs. But if we can create a
place that works for us, and one that helps our doctors not give up on us, then we could help out a lot of people in need.
Additionally, I know that there are many of us out there who are trained professionals who would love to work, but our unreliability due to our disease makes living up to normal standards impossible. I want to create a system whereby it doesn't matter if you don't know when you'll be able to work, the work is there when you're ready, and you never have to worry about dropping the ball. If you can't finish, someone else will pick up where you left off. You'd also be advised by the software when you're about to hit your monthly income limit, so as not to interfere with your disability benefits.
I don't know if I'll be able to do this all, but these are my life goals. There are too many people out there, stuck at home, cut off from life, through no fault of their own. We're routinely ignored and forgotten about because of our illness, and without a medical breakthrough, have no way of making our situation better. I want to change that.
Come join us! We're brainstorming and planning right now, so you could be there from the very start... Send me your email address and I'll send you and invitation to our Facebook group!
Oh, and for more information on HappyHealth, here's a video on the first phase of the project....
I look forward to hearing from you!!