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Why I’m Giving Up the Illusion That I Have Control Over My Disease

Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the exam table and, not taking a week or even a few days to grieve, I jumped straight into, “How can we control this? What medications are available and what are their success rates? What diet changes can I make? What does the research say about the drivers of autoimmunity? Will acupuncture help? Should I see a naturopathic doctor?”

I wasn’t going to accept a life of chronic pain, fatigue, and spinal deformity; I was going to find the capital A “Answer” to putting myself into remission, or even curing this thing. This disease was just a speed bump and I was all about getting over it and returning to my productive life. I wasn’t about to be taken down by it, not after having just survived multiple brain surgeries (that’s a story for another day; I have two brain conditions for which I spent a month in the hospital). Nope, no way, not happening! That was that. I threw myself into solutions. I had heard several stories online of people who had been diagnosed with rheumatoid arthritis or AS, or some other debilitating autoimmune condition, and they cured it with herbs or juicing or a macrobiotic diet — or even Shakeology (the older, wiser version of me would like to insert eye roll here). If they could do it, why couldn’t I?

After cutting out gluten, dairy, grains, legumes, nightshades and eggs — and taking a boatload of supplements — I was still largely unable to walk due to joint inflammation and severe pain three months later. I conceded to taking Humira, a black-box label drug in a class of medications called biologics, and it lowered my pain significantly for about a year, but not without side effects and infections. My agreement with myself was that I’d take the heavy duty and potentially dangerous immune suppressing Western drug, while committing myself wholly and completely to lowering my inflammation and healing my body naturally through the use of naturopathic and functional medicine. A logical plan, right? I would get to the root of this dis-ease and get past it.

Well, the best laid plans often go awry.

Here I am, two-and-a-half years later, having gone through numerous naturopathic and functional doctor appointments, countless functional medicine tests and protocols, green juicing, supplement plans that made use of the most cutting-edge research on autoimmunity (including vitamin D, fish oil, turmeric root supplements, medical-grade probiotics, and countless others), food sensitivity testing, extreme diet changes to remove inflammatory triggers such as gluten, dairy, and grains, the addition of tons of nutrient dense foods at almost every meal (organic, grass-fed meats, omega-3 rich wild caught fish, tons of green vegetables, bone broths, healthy fats), massage therapy and acupuncture, restorative yoga, and many, many more efforts toward healing.

What do I have to show for these efforts? Currently, not much more than being flat broke. I have still experienced debilitating flare-ups, and the most recent required a course of prednisone that led to mononucleosis, for the second time in my life. It’s almost unheard of to get mono twice, but I did, due to the immune-suppressing drug prednisone. What’s worse? Ever since March 2016 when I developed this infection, I have been debilitated with fatigue so severe that I spend most of the day on the couch or in bed — and I’ve had to stop working. We’re now looking at an additional diagnosis of chronic fatigue syndrome, and I’m in the appeal process for long-term disability benefits after being rejected twice. At 29 years old.

I’m not saying my healthy efforts were all for naught, or that I’ll be giving them up. While I continue to feel inflamed and stiff and largely unable to move these days, I shudder to think of how I’d feel if I weren’t eating well and taking supplements. Plus, I believe both functional and naturopathic medicine have a lot to offer when it comes to the chronic, progressive diseases that Western medicine just doesn’t fully understand and doesn’t know how to adequately treat.

However, what I am going to stop doing is expecting these efforts to control my disease or symptom activity totally. I have realized — what with all my free time lying in bed this entire year — that my exhaustive search to “get better” has been due, at least in part, to my unwillingness to accept that I have a disease for which there is not yet a cure. By keeping my focus solely on “getting past” AS, I was able to avoid the pain of having to accept this truth. I did everything right, I ran the gamut from Western medicine to Eastern medicine to functional medicine to integrative and back again, and here I am, typing this on my iPhone while lying flat on my bed because sitting upright is impossible today. And it’s not because I failed at anything. It’s because I have a complicated, painful disease that is unpredictable. Plus, I’ve found that the doctors who have really progressive ways of treating autoimmunity don’t accept insurance, so available finances will determine who I’m able to see and what I’m able to do; many a night has gone by where I’ve beat myself up for not making more money, not saving more in my early 20s, not being born into a different family, and on and on so I can afford this care. I’m letting go of this. It’s not my damn fault! And it’s not any sick person’s fault that the insurance and provider situation in America is heinous.

Living inside a body you cannot control is one of the most disorienting, disempowering, and terrifying experiences there is in life. No wonder I’ve been running from it. Not knowing until you wake up in the morning whether you’ll be able to check off even one of the items on your to-do list takes a tremendous amount of emotional strength to tolerate. But rather than trying to reject my illness and get on with my life, I’m practicing radical acceptance of reality. The control I’ve been seeking is an illusion. For me, drinking bone broth and taking some vitamins are not enough to control something as complex and multifaceted as my autoimmunity. And I am not a failure for not being able to control it through these means. This disease will always be there, and I will always need to manage it, and I cannot control that I have it any more than I can control the clouds rolling in.

And PS: anyone who doesn’t understand that doesn’t get the privilege of being in my life — can I get an Amen?

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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