Oh dear. My poor, neglected blog. That’s the problem with blogs; when you have lots going on which you would like to talk about, you have no time to blog about them.
I’ll try and give you a quick run-down. I had my sleep study and more bloodwork and tests run. Every test came back perfect, including the sleep study. The doctor going over my study results even said I’d slept better than most people do during one. As discouraging as that was to hear, he also said that went along with a chronic fatigue diagnosis.
Last time I had seen my doctor, she’d indicated that after these last tests were run, she wasn’t sure what else she could do for me. I was quite nervous and anxious going in to see her, and not only because I’d had the second-worst night’s sleep ever of 45 minutes. After she recapped all the tests she’s run on me in the past eight months, and how everything has come back normal, she finished by saying that she thinks my tiredness is from me being anxious and depressed. There’s nothing physically wrong with me; it’s just all in my head.
I wanted to slap her and burst into tears. I managed to hold it together and not do either. That cemented me decision to fire her and find another doctor, which I am still in the process of.
Her statement is utterly, completely absurd. Not only have three other doctors all diagnosed me with chronic fatigue, my symptoms perfectly match CFS and they do not someone who is tired because they’re depressed. I certainly am overly anxious at times; I tend to be somewhat emotional in general. But that is not why I’m tired. I’ve been so depressed I couldn’t get out of bed for days and weeks; I know exactly what that’s like. This is not that. One of the biggest distinguishing factors between the two is what you want. A person who’s completely depressed doesn’t have any desire to do anything, even the things they love the most. The depression eats away at your will and ambition and leaves you as an empty shell. If you asked a depressed person what they would do tomorrow if they woke up and felt better, they wouldn’t know what to say; depression had sucked their desires away. Someone with CFS, like me, would have a huge list of things they’d like to do. There are tons and tons of projects I’m at various points of and I would love to have more time and energy to finish them. I am limited in what I can do by my body. But if I woke up tomorrow and was fine, I would race around doing things.
I am not tired because I am depressed. Not that that can’t happen or I’m judging those suffering from depression; not at all. As I said, I have been there and know exactly what it’s like. But that knowledge also lets me know that this is something different. And if my doctor cared to try even a little bit, she would know that. The strangest thing to me about her dismissing me and my symptoms was her complete lack of desire to do anything about my supposed depression. If she really believes that’s what I’m suffering from, well, we should do something about it. But she doesn’t care at all. So she’s fired. CFS is hard enough to cope with when they people around you understand and support it. It’s impossible if someone important as my primary care doctor doesn’t even believe me.
This leads me nicely into one of the projects I am too tired to work on as much as I want. I have started a new photography series called Enchanted Sleep, chronicling the effects of living with chronic fatigue. I spent a while talking with other CFS sufferers and gathering details of their experiences… I want this project to not just reflect what my life has been like, but show the common threads which bind us together. I am also only using models for the project who have either chronic fatigue or our sister illness fibromyalgia. That will make it more challenging, yes, but also more meaningful when it’s complete. My hope is that I can find a CFS research group to partner with, to cross-promote and help raise awareness of the disease, and who I can also donate some of the print sale proceeds to.
I’ll end this entry with sharing the first couple images in this series. Feel free to spread the word about this; my goal is to reach as many people as possible and let them experience the world through our eyes in a visceral way. And if you are a model with either CFS or fibromyalgia, please feel free to contact me!