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I feel like their is a war waging on the battlefront of my body. I’m not talking about the pain or fatigue I feel from fibromyalgia. I’m not talking about migraines, or mood disorders, or any of that.

I’m talking about the way medical providers (“Western”, alternative, and complementary), the media, drug companies, and even sometimes people from my everyday life try to co-opt decisions about what the best treatments are for my body. Often, they don’t agree with one another. Then I’m left stranded, trying to figure out what the best course of action is. It is not therapeutic, and it doesn’t help.

Some (not all) “Western”/modern medical providers are all about science by the books. I think fibromyalgia threatens them, because the diagnostic tools basically involve ruling out other things and then poking the patient in 18 places. If 11 out of the 18 hurt (divided in certain sectors of the body), then it’s fibromyalgia. Even though fibromyalgia has been documented as a real condition in countless places – and new clinical data shows that fMRI’s can pick up signs of fibromyalgia in the brain – many doctors are only now accepting that fibromyalgia is a real condition in the way that arthritis or diabetes is.

“This is the crux of it, the reason more than a handful of physicians have such disdain for FM and its sufferers: they don’t know how to see it, how to measure it or how to effectively treat it.  In short, FM is a mystery many physicians would rather not contemplate…. ‘As treatments have been developed that work fibromyalgia is being more widely accepted as a legitimate, scientifically credible disease.’ In other words, FM might become increasingly viewed as legitimate because physicians are becoming better able to do something definitive to attenuate the suffering.”

These are the words of medical doctors (MDs) who practice/research at Johns Hopkins and the University of Michigan. Wait, wait – the people who diagnosed me with this syndrome might not believe that it’s real? When I was first diagnosed, my rheumatologist basically gave me the following prognosis: you may never be able to work full time. We don’t really have any medications for this. Physical therapy might help. Have a nice day, see you in six months. (Note: I do not see that doctor anymore, and have found much better ones.) I did end up going on some medications that seem to help, which I’ve added to my cocktail of mood disorder medications.

Physical therapy most definitely helps, as do other more “alternative” or “complementary” medical practices. Reiki, light touch massage, integrative manual therapy, meditation, healing drumming…all of these things have helped enrich and improve my quality of life. They also help alleviate mental and physical suffering.

The problem is that there are skeptics in both sides. Western practitioners often don’t “believe” in reiki, because of lack of clinical trials. The same goes for a lot of other alternative/complementary techniques. And a lot of people I know from the alternative community have their own prejudices against Western medicine. There are too many side effects, it’s too intrusive, the drugs often do more harm than good. I am not saying that alternative medical practitioners urge me to go against the advice of my doctor. But when I tell people the medications I’m on – it’s quite a cocktail – there is sometimes a general pursing of the lips. A certain look in the eye that says, “I wouldn’t take all those chemicals.”

Ah yes, the Great Medication Debate. Western doctors often don’t like to prescribe pain medications, as they can be addictive. Emergency room doctors sometimes treat fibromyalgia patients as though they’re drug addicts. As already mentioned, alternative medical practitioners have their own skepticisms about the effectiveness of prescription medications. Meanwhile, I run across the occasional friend who says something glib like, “I really don’t like taking medications.” Guess what. I don’t like taking them either. I take them because they help, even though there are sometimes really terrible side effects.

So what’s a girl to do? I’ve received positive help from medical practitioners from all practices. I’ve also received some care that just hasn’t helped. My social support network is, for the most part, very supportive.

You know what would be really helpful? If I didn’t have to defend one set of medical practitioners or traditions to practitioners of another tradition. If they worked together, and I received holistic advice that integrated healing modalities from a range of traditions.

This is my body. MY body. If you are going to be my medical provider, treat it with respect. Please leave your personal baggage at the door.

(Note: I’m not targeting this at a specific person. So if you’re someone I know, and you’re wondering if this is about you, it’s not. ^_^)

When I was in the 3rd grade, my teacher gave the class an exercise. We were given big strips of paper with the words “I can’t…” written on them. My teacher instructed us to fill them with things we thought we couldn’t do. My friend and I gleefully filled every centimeter with things we couldn’t do: fly, do algebra, dig to China, speak French…Our teacher then had us put the list of things we “couldn’t” do in a shoebox “casket,” which we ceremoniously buried in the schoolyard. She told us that limiting ourselves with what we couldn’t do created a self-fulfilling prophecy.

Years later, I got a similar message in group therapy. According to the psychologist there, your brain doesn’t focus on things like “no,” “not,” “don’t,” etc. So if you say something like, “I won’t commit suicide tonight,” your brain actually hears, “I won’t commit suicide tonight.” (A more effective way of framing that might be, “I will stay safe tonight.”) Basically, another example of the way you think about yourself determining how you will be.

People with physical or mental limitations are already coping with the effect of those physical/mental limitations (be they chronic pain, mood swings, side effects of medications, or what have you). Empowering yourself through the way you think and speak can improve quality of life and even improve symptoms.

Why is it, then, that our country’s [for me, the U.S.] disability support system focuses solely on what you cannot do? Determination forms evaluate how well you can function in terms of tasks in your daily life: cooking, driving, getting dressed, etc. I remember that when I first filled out one of those forms, I looked it over and though, “Wow, I am really disabled.” (This train of thought eventually fed into the pain/depression cycle.)

Positive thinking is left by the wayside as people with disabilities must pathologize themselves to get basic support systems that they really need. (Without Medicaid or some other form of insurance, I would have to pay $500 a month for medications.)

Our disability system is oriented towards paying the least amount of money possible to those who are deemed completely unable to support themselves. It’s a grudging, “Well, if you jump through all these hoops and prove you really need it, I suppose we’ll give you some money.”

Standard neo-conservative (and even neo-liberal) lingo also rails against those who “take advantage of the system,” “subsist off of government handouts,” and others who are just “lazy.” As though the limitations of disability are worth getting under $8,500 a year and jumping through the aforementioned hoops.

Meanwhile, the system has no trouble allocating roughly half our budget to military spending.

The stimulus bill provided a one-time payment of $250 to each SSI recipient. The bill also allocated $759 million (for fiscal year 2010 alone) for “continuing disability review” (CDR). CDR is basically a program that checks to see if people on SSI are still eligible. “Are you still disabled?” I recognize that this is an important question, but I am also troubled by a report by the Social Security Administration that asserts that, “Estimates continue to indicate that SSA will achieve a sav­ings in Federal SSI payments of roughly $10 for every $1 spent conducting additional redeterminations above our base workload volume.”

Our health care system if fundamentally broken. For gods sakes, people go bankrupt trying to pay their medical bills. I suppose it’s no surprise that the system for providing disability benefits grudgingly gives support only to those who are “most deserving” and “completely unable to work.”

Meanwhile, the determination process forces applicants into self-defeating and negative self talk. The application process can ultimately damage one’s self-worth, recovery process, and mental well being.

You may wonder, “What’s a better system?” How about a more nurturing and supportive system which provides a social and economic safety net to all individuals, regardless of how “worthy” they may be. Don’t hold your breath. I’ll keep hoping for and promoting a more compassionate and humanistic approach.

Note: I’ll try not to talk politics all the time, but I felt really passionate about this particular post.

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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