The headline itself was enough to get my hackles up: "Drug Approved. Is Disease Real?" As I read comments such as "other doctors ... say that the disease does not exist" and "the more they seem to be around the medical establishment, the sicker they get,” I became more and more livid.
I've been lucky - I have doctors who believe fibromyalgia is the real deal. I have a supportive extended family that has not for one moment questioned my illness or the severity of my symptoms. My former boss and co-workers accepted it as real and I never felt judged or belittled by them, and they all were understanding and sympathetic when I came to the decision I had to leave, even though it broke my heart. I've read and heard countless times that people struggle to get those around them to believe in fibromyalgia, but I'd never experienced it myself. Maybe that's why this article struck so many nerves.
I didn't hesitate to pen a response and let the newspaper know exactly what kind of negative effect a story like that can have. I've pasted my response below for you to read. I'm sure mine will not be the only one the NYT receives.
"I could not be more angry or offended by your article, "Drug Approved. Is Disease Real?" I was diagnosed with fibromyalgia about a year and a half ago, after spending months in excruciating pain and having no idea what was wrong with me. Now, I live with pain, fatigue, short-term memory problems and a host of other symptoms every day. I had to leave the career I loved, I can't do the things I want to do with my children and I've had to miss out on a lot of things. The suggestions that this is not a real illness, that it's merely a response to stress and that the medical community made me a whiner by diagnosing me with this are preposterous and insulting. Enough physiological differences have been found in people with fibromyalgia to show that yes, this is a physical problem. Simply because doctors don't yet understand it doesn't mean it isn't real.
For example, people with fibromyalgia have been found to have low levels of serotonin, norepinephrine and a certain growth hormone. We have high levels of substance P (a cellular pain messenger) and nerve growth factor. Brain scans show markedly different responses to pain than in most people - results that are consistent with studies into related pain conditions.
I am not a hypochondriac and I'm not a whiner. In fact, many of us struggle with taking on too much and with people not realizing how sick we are because we learn how to conceal it. I worked a high-stress full-time job for more than a year after my severe symptoms started and a lot of my co-workers had no idea anything was wrong. And it's not as if I don't know how to live with pain -- I've had chronic back pain since I was a child and it never slowed me down much. I also used to thrive on stress and loved working in a noisy, chaotic atmosphere. As a TV news producer, I lived for the excitement of breaking news and performed at my best when it looked like everything was about to fall apart around me. I had an incredible memory for details.
Then the pain started. Overnight, I lost my ability to think while under stress. I started having panic attacks. I became forgetful. I began to fear breaking news, or even minor develpments that would force me to juggle dozens of details. I could no longer tolerate the noise and lights I'd worked around for years. I was exhausted no matter how well I slept. The waist band on a pair of jeans could cause intense stabbing pains all through my abdomen, as could my 2 year old's elbow in my side. Before my diagnosis, I'd been to the emergency room twice - the first time, the paramedics were quite certain I was having a heart attack. The second, doctors were preparing to take out my appendix until images showed the organ was fine. Anti-inflammatories didn't work for me, and I developed sensitivities to several medications I'd previously tolerated well.
After months of enduring this and being tested for everything in the world, I finally was diagnosed with fibromyalgia. I started researching the condition and found that all of my symptoms fit - and yet I'd previously had no knowledge of fibromyalgia. By working with my rheumatologist and constantly reading and researching the illness, I was able to cobble together a treatment protocol that works for me. Yes, I tried Lyrica. It worked for the pain and what's commonly called "fibrofog" (the inability to think clearly at times) but caused a host of side effects just as debilitating as the fibromyalgia. What did I do? I adapted and kept looking for a better way. I'm lucky that I've found a way to keep my pain under control and can now work to manage my other symptoms. The allegation that a diagnosis actually makes people worse is ridiculous - if we aren't given a medical reason for our symptoms, how can we manage them? If I hadn't been diagnosed with fibromyalgia and learned about the abnormal serotonin and substance P levels, I wouldn't have known to try dark chocolate to increase serotonin or capsaicin to lower substance P.
One of the hardest parts of having fibromyalgia is having people not believe you are really sick. Some doctors accept this illness while others do not. People who've seen fibromyalgia destroy someone's life understand what it means. Other people read articles like yours, that give a polite but cursory nod to doctors and patient advocates who say this is real but spend most of their column inches quoting those who say it's not. The FDA, CDC and Mayo Clinic believe it's real. It's found around the world in people from all socio-economic backgrounds and has a long history. Please, before you report on a much-stigmatized condition, do more research and be certain you're actually balancing your coverage and not disparaging the people who are suffering both from the disease and the stigma. Your headline alone is enough to convince many people that no, it must not be real.