by Kacie Fleming
Five years ago this month, I was diagnosed with fibromyalgia (and a bit later, unofficially with chronic fatigue syndrome). My health crisis had begun a few months before, the fall after I graduated college, and continued to worsen. Of course in retrospect, I can see that I have been having minor issues my whole life that I thought were normal or just little quirks of mine, but January 2011 brought the full-blown crisis and diagnosis.
With that diagnosis, I thought the next step was to just take pills. The idea of me having a disease was such a foreign concept that it really didn't sink in how sick I was -- and how that sickness would affect my life in the long-run -- for a while. I didn't tell anyone outside of close relatives and friends, but I spent most of my time in bed and in pain, with absolutely no suspicion that something else might actually be wrong with my body. I found a list of "100 symptoms of fibromyalgia," at least half of which I had, and I understood about as much as there was to understand about this pretty common but unexplained syndrome. When they tell you you have fibromyalgia, they don't tell you how it got there. They simply give you prescriptions and send you on your way.
Finally, many months in, the repercussions of being chronically ill started to sink in. I thought I would just continue to take whatever prescriptions the doctor and I took a fancy to and continue to decline or at best stay how I was. There was no real hope for improvement. And all this at 23 years old.
Sometime in 2013 I decided to quit taking the classic prescriptions. I knew that they, at best, didn't help me, and I preferred knowing that if I was in pain, sad, angry, or foggy, at least it wasn't drug-induced.
Then later that year, I had my first experience with an alternative doctor who believed that illnesses that are labeled with terms like fibromyalgia and chronic fatigue syndrome are actually caused by any number of metabolic, structural, neurological, treatable, and even healable dysfunctions in the body. I had never heard such radical claims, but I had nothing to lose (except money and hopelessness), so we gave it a shot. And that's when the "fibromyalgia" blinders came down, and the revelation of what was really wrong with me began to come into focus. I didn't drastically improve during that time, but I gained two important things: the knowledge that "fibromyalgia" in essence means nothing and the discovery of the hopeful world of alternative medicine.
Several months into alternative treatment, I also discovered the importance of lifestyle changes: removing foods I should not be eating or that were hindering the repair of my compromised insides, removing harmful chemicals from my life -- which means mainstream makeup, hygiene, and cleaning products -- and adopting practices to limit my toxic intake and remove toxins from my body. Those changes alone have brought results.
By the beginning of 2015, we had moved two states away and found an even better alternative doctor--the last one had definitely been on the right track, but had only scratched the surface. This one determined what all was really wrong with me: a Lyme co-infection, metal poisoning, adrenal fatigue, leaky gut, and much more that I won't list here but that are very treatable and -- what's more -- healable. I'm not better yet, because we're just now getting into the good stuff. But I am in a completely different place, in every way, than I was in 2011-2013, and even before.
Looking back, I can't believe I ever accepted that fibromyalgia -- an unexplained, untestable, catch-all diagnosis -- was the answerless answer to my malfunctioning body. I can't believe I thought, as does everyone diagnosed with fibromyalgia, that I had no choice but to be that way the rest of my life, chained to a roller coaster of awful days and so-so days. I can't believe I thought every little or big symptom could be explained with "that's just a fibro thing." I can't believe I thought prescriptions were the only, however insufficient, answer. And I can't believe I thought that eating what I was eating and using what I was using were not only harmless but certainly had no correlation to my well-being or lack thereof.
You can't really blame me though, because everything I was doing and thinking, and not thinking, was normal -- second nature in our oh-so-advanced yet somehow oh-so-ignorant society. Blindly trusting the doctors, the pharmaceutical companies, the way "things just are." And yet I hate that I fell for it. I lost two and a half years thinking "all" I had was fibromyalgia and that that's just how it would always be, and I can't get those years back. But at least they got me to the answers of today.
I know that "fibromyalgia" is just a label that doctors give to patients that they cannot or do not want to actually help. They would rather slap a diagnosis on you and shove expensive pills down your throat the rest of your life. And in some cases they simply don't know better.
I know what all is really wrong with me.
I know that the horrible ton of bricks that buried me by January 2011 was not just one more fibromyalgia symptom or chronic fatigue syndrome but actually has a name: adrenal fatigue, which can be caused, in short, by many things and obliterates not only your energy to do anything at all but your ability to even get up and try. I had a resurgence of those bricks this past September and October when a horrendous cold shot my adrenals over again, and I am just now recovered from it. Can you imagine if that had happened and I still thought I just had fibromyalgia? Yet that is the normal assumption with "fibromyalgia" -- I would have thought it was just an awful, awful flare with no anticipated end (which is what I thought 2011 was), but now I know what it was, what caused it, and how to help it. And because of that, I was able to finally wiggle myself out of its grasp and back to my normal-abnormal and get on with this thing called healing. There's a glorious difference between helpless fear and hopeful empowerment, even if you're still suffering the same physically.
I know that lifestyle changes are a huge piece in the puzzle of healing.
And now I know that there is this thing called "hope" that refuses to leave. Because now I know there are real answers out there, and I'm actually on my way to finding them and accomplishing them, even if it takes years.
Let me insert here that if I sound a bit angry in this summary of the past five years, it's because I kind of am. I'm not angry that I'm sick, or that this journey to health is long and incredibly hard and may take years. Rather, I cannot help being angry at mainstream medicine and doctors for proving to be either willfully or accidentally ignorant when it comes to treating patients with chronic and particularly "invisible" illnesses. I'm angry that something so wonderful and hope-filled as alternative medicine is so looked down on and stereotyped in today's culture and is not only not mainstream but practically a secret that some people never even hear about thanks to the overwhelming popularity of what is mainstream and pushed by aforementioned ignorant doctors. And I'm angry that our society has totally fallen for exactly what I fell for, with most remaining willfully ignorant for the sake of what's comfortable or familiar and the rest totally unaware that they're missing anything. I've found that most people who are chronically ill (or headed there) would rather stay as they are in their familiar misery than begin seeing an out-of-the-norm doctor with out-of-the-norm but highly successful practices and give up their familiar but unhealthy lifestyles to further the progress. It is frustrating when you've found life-changing answers but those who need them won't listen--it is true that you can lead a horse to water, but you can't make him drink. But it is equally rewarding when someone does listen, and if I convince just one person of the value of alternative care, the frustration will be worth it. And maybe the day is coming when alternative medicine and accompanying lifestyle changes do not bear the ridiculed, fruity stereotype they do now.
My view on healthcare and medicine and chronic illness has clearly drastically changed over the past five years. And while I feel stupid for falling for ignorant views for so long, I no longer feel helpless and confused but vindicated, informed, and empowered. It is mind-blowing to me the information I have learned in five years on illnesses and treatments that I didn't even know existed. And I know I still have much more to learn.
But if all my learning has taught me anything, it is this: Question everything. Don't accept anything simply because it's mainstream, or common, or comfortable, or easy. God gave you a brain to think for yourself and not blindly bend to whims of other people (and especially multi-billion dollar companies) on something as priceless as your health. If a doctor (or many doctors) has slapped a label on you and handed you a bunch of prescriptions, you don't have to settle for it--and I beg you to not. You and your body deserve better than that. Abandon what's "normal," even at the cost of popularity and acceptance, and take your health into your own hands.
There is this secret thing called "hope." By the grace of God I found it, even while I was drowning in a myth of a diagnosis. And I'm doing all I can to keep it from being a secret any longer.
This post was originally published here and is reposted with permission.
Kacie Fleming has crammed a lot of learning about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her days (and most nights) working on her handmade jewelry and subscription box business.
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