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  • T. V. Pinkard

How Strange, How Odd, How Curious

[CN: chronic illness and heavy medical talk.]


It’s not giving up.


I’m telling myself that, though it still feels that way at times. It’s been two years and five months that I’ve toiled with this illness. Something that masquerades as SIBO (though SIBO no longer explains the breadth of my symptoms) and refuses to unveil its cause. Two and half years pinging from one doctor to the next.

The first one tells me my symptoms are just depression, and I should get out and smile more.


The next one runs a generic panel, comes up with nothing. He offers me antibiotics with no evidence that I should be taking them.


I see a nutritionist who takes a stab at treating Candida, despite me testing negative for it. She gives me biofilm disruptors that wreck me; she hums curiously when I report it doesn’t help. After two futile months, she sends me to a naturopath.


I become this doctor’s test subject for 1.5 years. We get a SIBO test and, 9 months into my battle, I get a positive result. And not just borderline, but truly positive. I’m thrilled. I think this means I’m nearly there. The nightmare is almost over because we found it. It has a name.


…except only about 50% of doctors I meet pretend the diagnosis doesn’t even exist. Even fewer know how to treat it. Because there are some folks who take an antibiotic and brush their hands of this nonsense. And then there are others, like me, who stay in its vise for years. Decades. Always circling around that same question: What’s the cause? For, yes, I have SIBO, but that only confirms the symptoms. It confirms what part of the body isn’t functioning right, but not why.


The antibiotics don’t work. So we try herbals. Berberine. Oil of Oregano. Herbs that are supposed to do what the antibiotics failed to: kill the bacteria, clear it out. I can’t get through the first week and spend Christmas Eve on the bathroom floor.


Some months go by—I ride the waves of my critical flare ups, which reduce me to nothing, and rare periods of stability where I don't feel "good" but "as good as can be expected." I cannot savor peace in this place, for I must steel myself to face yet another round of treatment.


Maybe try the berberine again at a lower dose? Nope.

Another three weeks to settle my system.


It’s my birthday; I indulge in a couple glasses of wine, thinking surely that’s okay. The next day I’m in the hospital for unrelenting vomiting. They do a scan. Nothing in the belly...but we found something in your lungs.


My world comes to a screeching halt. What? A doctor calls it Walking Pneumonia. I’m leery, but he makes it sound like you take a pill and it clears up. So maybe this is what’s been going on. I make an appointment at National Jewish, where a specialist scoffs and tells me that is not a true diagnosis, but a stand-in for “we don’t know what’s wrong, we just found something there.” I’m treated like a fool for not knowing this, for taking an ER doctor at his word. I fire the specialist four months into working with him after he calls me "difficult" in his notes for asking questions (annoying, frivolous ones like: do you recommend I get this major, invasive lung surgery you’ve blithely suggested?)


We launch into a seven-month ordeal of tests and biopsies and procedures. I dread what they will find; there are nodules in my lungs. That can’t be a good thing, can it? The biopsies are clear. Six months later they check up to see if the problem has progressed and nothing changes. Everyone shrugs their shoulders and sends me out the door.


I go forth with the medical guidance to ignore my lungs, ever wondering if I do so at my own peril.


But my gut has stayed the same. Maybe we should test for mold? Heavy metals? Uh oh, aspergillus. Detox protocol. Take these five supplements, two or three per day per herb. You can’t handle 12 pills a day? Don't you want to get better? Cycle in saunas, as much as you can. I sweat. Purge. More pills. But maybe this is the root of it? Maybe I just have to endure. Don’t you want to get better? I’m on the floor. Can’t you just push through?


My skin turns against me. Oh, it’s turned cystic? How strange. How odd. How curious.


We reduce the herbs by half, but the problem remains. I get worse and I get weaker. My skin is so bad, I no longer want to go outside; I don’t want to be seen by strangers or loved ones. We cease all treatment. Gotta stabilize again. We run a nutrient panel. Shit. Critically malnourished. “I’ve actually never seen it this bad in anyone before.” How strange. How odd. How curious.


Have you tried IV treatment? Surely you’re not tired of needles in your skin, poking holes in the same vein week after week. You can just regiment that in, right? Yes, out of pocket. It’s always out of pocket. Don’t you want to get well? You should try another new diet. Restrict your food even more. Learn a whole new way of cooking, of being. I don’t see why you can’t commit to this.


I lose my patience. A year and a half in, she all but tells me she’s given up on me and she is out of ideas. She nonetheless leaves me with the burden of ending the relationship. I turn back to Western Medicine, weary but willing to try again. I visit another GI. She tells me, “You have IBS,” acknowledging it is a bullshit diagnosis, a catchall net for a problem they fail or can’t be bothered to understand. “You’re just going to have to manage it for the rest of your life.” I never go back.


I find another naturopath, though it is a two hour drive to reach him. I want none of that—do I really have to make things harder? But he comes so highly recommended. A real miracle worker with hard-to-fix cases. Ah… oh dear. He’s a Chinese herb enthusiast. Get ready for another round of sixteen supplements a day. I know you said you didn't want to take them. But I need you to give them a chance. Don't you want to get well?


In the meanwhile, we target my reproductive health, which has tormented me my entire life. Maybe… maybe. Wait. This all sounds a lot like Endometriosis. Wait. That would explain just about all of this.


I’m given a pill for my skin and to balance out my hormones. We schedule a surgery—my first—to diagnose and remove any endometrial tissue they find. I’m terrified but hopeful. Maybe here. Maybe at long last, after so much suffering. And it isn’t that I want endo, any more than I want any of these other chronic conditions. Yet people don’t seem to understand what a “negative” test result does to my psyche; to be told, “You’re good! Aren’t you so relieved?” To cry over the words “all clear” because it’s clearly not.


The surgery comes, and it goes. I take almost two months to recover where it takes most other two weeks. My body can't heal like it used to. It’s still malnourished. Emaciated. Running on fumes. Of course it doesn’t appreciate being opened up and prodded.


But as I recover, I hear the dreaded words: no endometriosis found. It was empty. I was empty. It was clear. There are signs to suggest possible adenomyosis, for which there is no test or treatment other than to schedule a hysterectomy. All that is found in surgery is an enlarged section of my intestine, ballooning right in the place where SIBO manifests. I’m deeply unnerved. No one wants to hear “enlarged” anything. I’m sent to yet another GI. I think that surely now things will be different; I have images. Hard fought data that shows something. But the specialist says it means nothing to her. "I'm used to looking at it from the inside."

She thinks it's Crohns or microscopic colitis. I read up on both, once again feeling that eerie resonance. This would explain all my problems, too. I’ve gotten a scope once before, but it's been years, and this disease dodges detection without biopsies. We need to schedule a colonoscopy.


I return to the naturopath, feeling defeated. He pulls the wrong file. Doesn’t seem to remember my name. Doesn’t remember that I got surgery, doesn’t want to hear about how it went. He gives me more supplements to treat endometriosis, despite telling him several times over, “okay but I don’t have endo, so are we just going forth pretending like I do?” He refuses to answer me. I don’t go back.


The pill they gave me for my skin gives me POTS symptoms. My heart rate and blood pressure are out of control. I need my walking stick more frequently. I can’t go out alone in case my energy drops, so I don’t find myself on the floor of a shopping mall, afraid I’m about to pass out. I finally get a doctor to call me back about it; she counsels to get off the drug immediately. I proceed to get three periods in the span of a month. No one will call me back. I guess bleeding for 17 days out of a month isn’t pressing enough; I wonder how much more I have to bleed for this flag to be red enough.


I approach the scope, traumatized by my last experience, knowing the prep will massively set me back. And it does. I spend the night on cold tile, feeling like I’m going to die. I have to use my walking stick to get to the procedure in the morning; I’m too weak to support myself entirely. The nurse gives me a strange look. You’re too young for that.


I agree. But here we are.


Two weeks to recover from the colonoscopy, and I anxiously await the results. Maybe here. Maybe now. After all this time. But no one calls me. They send a letter instead. “All clear.”


I cry the rest of the day and can’t seem to stop; I’ve also started bleeding again. After prodding them for another week, I get someone to call me, at last, to walk me through it. The nurse tells me the same thing that unfeeling piece of paper did. “All good!”


I see red but rein back my anger to ask what the doctor recommends. Oblivious, she answers with the same vague cheer: “She says to do another scope when you’re 45ish. But that’s all!”


Only this wasn’t a routine procedure. I’m sick, you monsters, as I have been all this time. Yes, all this time. Every day. Morning to night.


So where am I now? I’m tired. I’m a kind of tired you can’t imagine. All that I’ve described gives you a glancing overview of the physical, but it says nothing of the emotional distress. That’s the real battle with chronic illness: finding ways not to slip into insanity, not to gaslight my own reality, and blame myself for a medical system that is failing me, not the other way around. The battle feels even more hopeless as you realize it's not just bad luck. This is not a bug; it’s a feature, and the system is working as designed.


I’ve had, perhaps, one too many let downs. Enough repetitions of this dance—enduring miserable tests and procedures that shatter me, putting all my hopes on the next possible diagnosis, and getting crushed all over again when nothing comes of it—and I struggle not to make an enemy of hope. Hope feels dangerous; hope leads to heartache. I’m a fool for hoping; that’s what the medical system teaches me.


If you are sick in a way that isn’t easy for us to figure out, it’s your fault.

If you have a condition that I don’t understand, it’s your fault I don’t bother to learn.

If you have symptoms that don’t align with what I think you should feel, you’re making it up.

The answer is not staring me in the face, which means there has to be something you aren’t telling me, something you aren’t doing well enough. Don't you want to get well?


Imagine telling a cancer patient to smile more. Imagine asking someone who’s wheelchair-bound if they’ve tried dieting. I’m not saying my struggles are the same. But there is something deeply cruel about looking at someone so obviously ill, who has been beaten by a health "care" system that doesn’t care about them, and assuming they put themselves there.


So when people ask me how “everything” is going, how the health is faring, the wind falls out of my sails. Because no one wants to hear all this; I seldom want to report it. Most people who once asked me for updates have gone quiet now, and I’ve gone quiet too. I have friends who don’t call me anymore. Perhaps they are afraid of No-Good-News-Nancy.


Now I look at this exhausting but not exhaustive list and I come to a difficult conclusion:


I’m done. I’m done throwing myself into the fighting ring. Nothing but despair fills me at the thought of starting over with yet another doctor. Another specialist. Another new person to give the same spiel, who will want to run all the same tests (they just FEEL better having their own data), who will never bother to follow up with me, whom I must hound and harass just to call me back, to reassure me I’m not dying. (They always think they are gonna be the ones to fix this; they always give up.)


I’m done trying new supplements and new prescription drugs that fix nothing and only seem to lather on new concerning symptoms. I'm done getting worse in the pursuit of getting better. I’m done trying to find a name for the monster that has me in its grasp. By now, I expect it has many names. It has grown many new heads like a hydra whose neck gets chopped every time we take a stab at an answer.


But that doesn’t mean I’m giving up. I will take some time, as much as I need, to see if I can’t find balance on my own. See what happens when I remove this element of “healers” who behave like mad scientists. Who treat me like a little mouse, all white fur and red eyes, who can writhe and whimper beneath their needles, be stripped bare of my meager strength, and evoke nothing more than a hum: How strange. How odd. How curious.


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