I wanted to share with everyone my story, as I hope it encourages everyone to keep on pushing til you find a good doctor, even though sometimes it can feel hopeless.

About a year and a half ago on the eve of my wedding (true story, sigh), I fell seriously ill and never got better. I'd never really been to doctors all that much in the past so the process daunted me, discouraged me, and pretty much beat me down. I went to doctor after doctor, all of them saying my tests showed nothing, nothing was wrong with me, I should just go home and "feel better." Unsurprisingly, that did not help, and my condition worsened. After six months, I broke my internal taboo about researching medical conditions on the internet. It was that or allow myself to slowly degrade into nothingness. I found out about Chronic Fatigue Syndrome, read up on it on the Centers for Disease Control site, and decided to talk about it with my doctors. Responses varied from "never heard of it" to "that's not real" to (my favorite) "there's no test for it (true), so it can't be diagnosed (false), and even if it could, there's no medicine for it (true), so there's absolutely no way to treat it (false - depending on your individual condition, there's things that can help).

It was pretty clear I was going to have to find a doctor who knew half a damn about CFS. Now, I live in a big city (Los Angeles) so how hard could that be? REALLY HARD. Doctors who advertised their knowledge of CFS seemed to fall into two categories. 1. Quacks, who were taking advantage of a condition that has little research base in order to sell snake oil. 2. More legitimate seeming clinics, but, still, my insurance wouldn't cover them.

After months of research, I was about ready to fork over the bank-breaking sums it was going to take to go to one of the private clinics, when I stumbled across a small entry on one of the CFS sites for a doctor in Beverly Hills who was a UCLA professor, a Cedars Sinai Doctor, and who'd also graduated from Princeton and John Hopkins. He's a rheumatologist and his speciality is osteoporosis, but he treats fibromyalgia and, so, almost default, he had also learned a lot and treated a lot of fatigue patients. But best of all, MY INSURANCE COVERED HIM.

I went in to my first appointment with fairly low expectations, all the other doctors in my life had let me down. I had my first sparks of optimism when I walked into the office and saw a sign that said "No perfume please, our patients tend to be sensitive to scents" and I thought MY PEOPLE.

The doctor spent 45 minutes with me the first visit, painstakingly reviewing my condition, all the weird symptoms that made all the other doctors look at me like I was crazy, he was like "nope, that's fairly common among CFS patients." He said CFS is a bucket diagnosis, there's many paths to the same symptoms, so we were just going to have to experiment with treatments until something worked. After having survived over a year of anguish, I walked out of that appointment with a treatment plan and, what mattered to me most of all, a diagnosis - plus, the admonition to keep in regular email contact with him between appointments so we could monitor my progress.

Over the last couple of months, we have done just that, tried and tweaked treatments to work for me, and it has changed my life. I went from walking in to that first appointment with a brain so fogged it was hard to function and muscle strength so deteriorated he was concerned I was very close to becoming bed bound to, now, having the energy and brain power to make some very major and exciting life changes.

Look, I still have a chronic condition. I still have to pace myself - I can't do outings on the weekend that last more than 3-4 hours. I still have to be careful about how much physical exertion I do - more than 15-30 minutes of scrubbing and cleaning can crash me for 24-48 hours, so my house is not as clean as most people would find acceptable. I also know that with CFS, there's no guarantee my body will continue to respond well to treatment. But, for now, everything is manageable, the pain is manageable, my energy levels are manageable, and the future seems manageable now.

I also know that I am extremely lucky. We know so little about CFS - we are at the mere cusp of learning about it. Much, much more research is needed. I agree with fellow CFS sufferer Toni Bernhard when she predicts in her book "How to Be Sick" that, once more research is done, CFS will turn out to be dozens of individual illnesses, all with unique pathologies and treatments. I am extremely lucky that my version of CFS has responded so well to treatment so quickly. I know there are so many of us out there who haven't been as lucky as I have, whose CFS is not responding well to treatment. We need to be investing in so much more research into CFS, so we can find solutions for everyone fighting this extremely debilitating, life-changing condition.

But until the point when this condition is more thoroughly researched, everyone deserves a knowledgeable, understanding, doctor who will listen and work with you to find treatments that will help, if not substantially, at least to ameliorate the pain. We all deserve that. And it tears at me that this is so soul-crushingly hard to find in our medical system. And, for God's sake, we have a FATIGUE condition, our internal fuel is severely limited, so it can be tempting just to give in to the whispers of the nay-sayers and "just go home" and let it be and fade away. God knows, I've been there. But, now, looking back, I am so intensely grateful and also in bewildered awe that I found the strength from somewhere, I don't know freakin' from where, to push and push until I found a doctor that would be a partner with me in my condition. So, please, don't give up.