“I’m starting to believe that what’s actually wrong with me is really there.” -Jamie
After the last installment of the RD Project (read Eliza’s story here), it should be pretty clear that at least – maybe even especially – within the disability community, not all disabilities are seen or treated equally, unfortunately. But this exists for us people with disabilities, too, in the larger, “able-bodied” world, but maybe not in the way most would think. Isn’t it strange that we – you – can read the stories of people with permanent physical disabilities and be bum rushed with positives: with hope after loss, with inspiration, and motivation for starters. There’s something about seeing the physicality of a permanent disability, of the missing limb or the long, jagged scars hinting at what’s underneath. But what of the non-apparent disabilities? At words like depression, autism, bipolar disorder, andADHD, we – you? – are mostly skeptical, critical, scared, or worse, hypocritical. Why is it so difficult to believe those, to trust when the owner of a non-apparent disability says that she is unwell or offer aid to someone who just looks healthy? We could talk about mental illness and intellectual or social disabilities and differences for days – and believe me, I will – but for a moment, let’s (re)define the terms of disability. Or more specifically, let’s define the terms of the Redefining Disabled Project.
At the heart of the RD Project’s ethos is a desire to spread awareness about our bodies’ limitations that inspire power, ability, and success and to encourage compassion amongst all people, regardless of ability. I aim to shed light on what it’s like to live and thrive with a disability or difference, whatever you choose to call it. I don’t write to evoke pity, to sensationalize those with disabilities or to villainize those without disabilities. This is not some kind of disabled circle jerk or a lambasting of “the others.” I purposely don’t photograph the broken and twisted parts of my models’ bodies* or their hardware, the chairs, the prostheses, not only because I choose not to exploit them or find fame in their trauma, but also because these disabilities are not who they – we – are. Let me repeat that: our disabilities do not make us. We have them, but like any other trait, our disabilities are merely one part of us. The disability part of us, across the board, also happens to be one of the most misunderstood and criticized, which is why this project exists. It is not, however, my job to convince anybody that a certain illness – psychosomatic, non-apparent, whatever – is actually a disability “worthy” of the term. That qualifying bullshit ends here at the RD Project and is exactly what perpetuates misunderstanding and intolerance of people with disabilities both within our disability community and without.
That said, on to Jamie’s story. (Jamie, if you’re reading this, I’m sorry/not sorry for my rant and for that fact that I used the term circle jerk in your story. I’m sure you, of all people, totally get it and are laughing your pants off right now.)
Jamie, who suffers from fibromyalgia, applied to be part of the RD Project with a doubt-filled email. “I’m not sure if I qualify,” she began, and then ended with, “Really, I just want to know if I even fit into your project…” It was not the description of her struggle or of her chronic pain or even my own experience with a sufferer of fibromyalgia that allowed it to “fit” in the RD Project, but rather that doubt, that gray area that seeped out from between the lines of the message. It was her self-doubt and the mistrust others have in her claim to this syndrome that is a common theme that runs through the disability community, though I’d venture to say that those with non-apparent disabilities experience this on a more extreme level. For example, people don’t doubt that I am missing a leg when they see my shiny red titanium pylon, but Jamie is constantly defending how she feels, proving to others and even to herself that the diagnosis is, in fact, accurate.
Fibromyalgia is a disorder in which the brain misprocesses pain signals. Much of the widespread chronic musculoskeletal pain and tenderness is often found in the joints, muscles, tendons and other soft tissues, but can literally be anywhere on the body. The pain is debilitating. For example, a fibromyalgia sufferer may experience a pain tantamount to that of a dislocated shoulder, though the shoulder is physically perfect. Most often, people with fibromyalgia and their physicians confuse their symptoms with rheumatoid arthritis or lupus and wonder why their treatments and medications aren’t working. Jamie tells me that her fatigue, general achiness, and “intense, intense, intense shoulder and neck pain, headaches, [and] joint pain, knees in particular…has been around for as long as [she] can remember.” At the beginning of our interview, I heard her use the term “phantom pain” to describe it and, to an amputee, you’d better be missing a limb to call dibs on that term. I took umbrage to something I thought, for sure, she couldn’t possibly truly understand. By the end of our interview, however, I felt completely ashamed for thinking it. How doubly awful it is to experience such pain but have nothing physically to show for it. It’s almost anticlimactic. But that’s not all.
Fibromyalgia sufferers also bear the burdens of extreme fatigue, sleep problems such as insomnia, chronic headaches, severe depression and anxiety, irritable bowel syndrome (IBS), temporomandibular joint (TMJ) disorders, and mood disorders. According to mayoclinic.org, “Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”
So, to wrap up, you could have experienced some traumatic shit (a rape, a death of a loved one, a car accident, sports- or work-related injury, whatever) – or not, as is Jamie’s relatively rare case – and then be deluged with extreme pain, fatigue, and mood swings, and THEN be told by physicians, friends, family that you’re insane, it’s all in your head, you’re just depressed, and that you need to fix yourself. Sounds like a walk in the park, eh? What’s that Regina Brett axiom? “If we threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
Now, after several conversations with Jamie and a lot of research on fibromyalgia, I’m beginning to feel like I should stop my amputee bellyaching AND my disability qualifying. At least when I have pain, I can look down and see the price I paid and remember how much worse it once was, how much better off I am now; there’s an odd sense of satisfaction and comfort in having the physical match the neurological. That justification works the same way for the people around me. For example, I had an above average stressful day yesterday which resulted in a sleepless night writhing around in phantom pain spasms in 30-second intervals for no less than 10 hours straight. When I mentioned that to people today, not one person questioned it because, hey, the leg is missing, it must be true. That’s not the case for Jamie; she has all her parts so her chronic pain is almost unjustified, unproven, and unearned.
Probably also because she’s young and super-model pretty, she has the added burden of having to defend herself, of proving to everybody, from strangers to her doctors to her best friend to even her dad, that her illness actually exists. Hell, she even has to convince herself sometimes, as I witnessed firsthand when she initially applied to be part of the RD project. There’s a lot of anxiety in dancing the tango through that social minefield alone. Luckily, she has a rad group of friends and, though she was reluctant to tell one of her best friends Kaitlin the truth about her fibromyalgia after years of denying it herself, Jamie, relieved, tells me that Kaitlin responded supportively and lovingly. (You go, Kaitlin!) Not everybody has been as supportive of Jamie who, though disheartened, understands the response. This kind of diagnosis and the stigma around it, she explains, makes it difficult for the people closest to her to “mash up this new idea and it kind of re-colors our whole friendship.” As it is for many people with non-apparent disabilities, entourages don’t have that in-their-face physical reminder that their friend might need an extra hand or, at the very least, some patience and tolerance. But wait…there’s more!
In addition, many neurologists still don’t think that fibromyalgia is a real condition, a “waste-basket diagnosis—a dumping ground for malingering, drug-seeking patients with unexplained pain, fatigue, and depression,” explains John Kissel, M.D., a neurologist and the co-director of the MDA/ALS Center at Ohio State University, in an American Academy of Neurology article written in 2009 titled, “Fibromyalgia: Is Fibromyalgia Real?”** I briefly made contact with a neurologist, an adored friend of mine, who shall remain nameless, and her immediate text response to my inquiry was, “You can (talk to me about fibromyalgia), but it isn’t a real disease…” Jesus, can you even imagine being asked if your illness is real? Like, Are you sure you’re missing a leg? You say you’re a quadriplegic, but have you just tried walking it off? Palsy Shmalsy. Do you think that stroke might just be laziness? What’s cancer?***
What a damn nightmare!
I also chatted recently with a nurse friend of mine who shall also remain anonymous about fibromyalgia and she, too, claimed that fibromyalgia was a “bullshit diagnosis,” but she placed the blame on physicians who didn’t do their due diligence in figuring out exactly what was wrong. She told me that she more and more often hears her patients walk in with indescribable pain and walk out with a fibro diagnosis and meds. “It’s easy,” my nurse friend said, “to assign the patient something that, by it’s very nature, is unexplainable.” She continued to elaborate on this seemingly unforgiving, bleak, but arguably the most honest professional take yet: the overloaded doctors don’t have to pursue it, patients usually leave the hospital feeling redeemed with their fancy-sounding syndrome and go the course of pain meds put on the tabs of insurance companies for the rest of their lives.
Jamie, who shares the fibromyalgia diagnosis with her mother, grew up watching her mother’s health deteriorate and, alongside her dad, focused much of her effort in caring for her and making her as comfortable as possible. Jamie knew that she, too, had fibromyalgia when she started experiencing the same numbness and tingling in her arms and shoulders that she witnessed in her mother at the beginning of her illness. She hid it from her parents and friends or tried to tell herself that everybody experienced the same thing. As a 10-year-old, she saw the contestants on the reality TV show Survivor hold buckets of water over their heads for many minutes; last ones standing moved on to the next round. Jamie, who couldn’t, even then, hold her arms over her head sans water buckets for more than a few seconds, believed that the Survivor contestants were superhuman. She was very active and athletic then**** as she is now, so she tried to brush away her fears of developing fibromyalgia, thinking, I can still do this and this and this, so I must be fine. Even as her symptoms worsened, they still didn’t compare to her mother’s who, at one point, made a comment that she wished for something more tangible, more fatal so that there would be an end to her misery. Because, you see, nobody is going to die of fibromyalgia, so fibro sufferers are likely to experience this into perpetuity until something else kills them.
Nobody seemed to notice Jamie’s symptoms in the shadow of her mother’s, and Jamie again and again explained away the pain. But, she tells me, “I started feeling angry. I mean, I was with Mom all the time. Why didn’t her doctors see how badly I was feeling and make a connection? Why didn’t my dad make a connection? Why didn’t my mom make a connection? I knew then, but I was just so scared. Seeing my mom and thinking that that might be what my future would be like was what made me afraid of going to the doctor. I so badly didn’t want this.” Jamie didn’t grasp how bad her symptoms actually were until she left for college and saw that her peers didn’t experience the same pain. She realized that “just because [she] was not the worst case [of fibromyalgia], didn’t mean that it didn’t exist,” that her reality was similar to yet independent from her mother’s.
It was also when she went to college that the extreme “emotional instability,” as she refers to it, set in. She would cry when she was angry, she’d feel emotionally numb when she was intellectually incensed. The university counselor simply said she was depressed. Her boyfriend and the closest person to her, Jad, was the one who encouraged her to seek a more accurate diagnosis, having made a correlation between her physical and emotional states. He somehow knew there was more to Jamie’s supposed depression and gave her the push she needed to figure out what she really had and what she really needed to help her get better. After years of vacillating between feeling terrified of confirming her fibromyalgia and being generally worn out by physicians, she finally sought medical help. “[Jad] was the conduit for me to see a doctor in college. I would never have thought to on my own…I see him as responsible for setting me on the track to health. His support got me the medical help I needed…[he] got my mind in the right place so I could take care of the physical stuff,” she elaborates. After second and third opinions and a bit of trial and error, Jamie and her physician were able to pinpoint treatment and medication to help regulate her symptoms. Now, the rest is up to Jamie.
She explains that she is pretty obsessed with her health and fitness. “It was never my intention to lose weight or anything. But I guess weight control is a nice side effect,” she tells me after endearingly referring to her formerly “huge fuckin’ ass.” A healthy diet and daily exercise is essential to her well-being. On days in which she’s unable to fit in a workout, she’s utterly wrecked for days, sometimes weeks, after. The numbness, burning, tingling – all typical of fibromyalgia – return with a vengeance. It can be a “full-on hot mess pain that definitely fucks with my mind,” she says, “but [it’s] more of a tiresome annoyance and that feeling of ‘Ugh! Again?!’ and of not catching a break. A wearing down of sorts…”
It’s been a little over a year now, with proper medication, a well-balanced diet, and regular exercise, that Jamie has been able to keep her symptoms at bay. Sometimes, she says, after long periods of feeling well, she questions having fibromyalgia at all. “I’ll even wonder if having fibromyalgia is still a part of my identity if I’m feeling so good. It’s a huge mind fuck,” she says of the tease of liberation from her diagnosis. Then, seemingly serendipitously, she’ll treat herself to some junk food or her doctor will prescribe a different medication or, more often, a simple cold will knock her out of commission from working out for a day or two. What follows is days of misery and a reminder that, yep, the fibro is still there. The symptoms only begin to subside when she peels herself out of her sickbed to run a few miles. So with that, she admits, “I’m starting to believe” – after years of denial – “that what’s wrong with me is actually there. Most days I do believe it,” she explains, adding that now that she knows how to prevent the symptoms, she feels more in control of her life, though the fibromyalgia is always lurking in the background. “…I know what feeling healthy and feeling good feels like now, and I’m not going to let that go.”
Since her diagnosis, Jamie has run a half marathon – her first – with her supportive bestie Kaitlin as well as the San Francisco half in July, the SF Nike Women’s half earlier this month, and intends to run her first full marathon this December in Sacramento. She quite literally took her syndrome and all its pain and stigma and, well, ran with it.
I was inspired by this newfound high of Jamie’s, this treatment for which she’d worked so hard, and wanted to photograph her when she felt the most proud, powerful and accomplished: after a marathon. So I met her in Golden Gate Park right after she finished the second course of the San Francisco half marathon. She said she was exhausted, though without makeup and drenched in sweat, she was beaming and as effervescent as ever, making her portraits one of the easiest I’ve done yet. There to support her at the finish line was her dad who, like any father worth his snuff, clearly loves and is protective of his little girl. He seemed skeptical of a lot of things, but mostly of me, I assume, as I was taking photographs of his precious daughter with the intention of posting them on the Internet. He sized up the project and wanted – needed – to make clear to me that Jamie isn’t disabled and, thus, doesn’t fit in with the RD project’s other participants. I smiled and said, “She’s not disabled. And that’s exactly why she doesqualify for the project.” He turned to her and asked, “Are you sure you want people knowing this about you?” Jamie, immediately and incredulously squeaked, “Are you kidding?! I’ve been waiting for this opportunity for TEN years!”
Whether or not fibromyalgia qualifies as a disability is irrelevant. Every day Jamie actively refuses to be limited or defined by her diagnosis. It is in this way that Jamie is a perfect fit for the RD Project. It is in this way that I hope others – you? – regardless of the disability, the diagnosis, the stigma, the situation, will see that you are not alone. Jamie said it best in her application to me: “I feel like everyone goes through something and this is just my ‘something.’”
*There is, indeed, an exception to this rule. If a body part or the gear is essential to the person’s story, pride, success, happiness, or identity, as in Stephanie‘s case, I include it in my portraits.
**This article is extremely informative and insightful.
***I feel obligated to write something about how fibromyalgia doesn’t compare to quad/paraplegia, cancer, palsies, or being an amputee, but you know what? I won’t. I think I’d only be doing that to appease certain readers and wouldn’t be doing justice to Jamie or my overall point. Who am I to disqualify Jamie’s experience or the experience of other fibromyalgia sufferers? So I won’t. And neither should you. Please read on.
****Among other sports, Jamie was a junior black belt in karate, having practiced from ages 5 to 10.