Medication for an autoimmune disease? Buckle up and let’s get real—pills, injections, infusions—they’re all served with a side of “this may kill you.” Have you read the side effects? “Injection site pain,” oh joy! Then there’s PML, that little treat that could lead to death. What a lovely pick-me-up. And I’m supposed to willingly put this in my body? For two years after my diagnosis, I flat-out refused to start medication. The hell with that. I already had enough to deal with—life-altering side effects weren’t something I was going to volunteer for just yet.
But, of course, MS wasn’t about to wait for me to come around. Two years down the road, my MRI showed new lesions and my symptoms started ramping up. So, they threw me on Copaxone, one of the “safer” choices, according to them. Spoiler alert: four months later, I had six active lesions all at once. SIX. Not one. Not two. Six. My brain looked like a Christmas tree, except there was nothing festive about it. The inflammation was so bad that it led to edema—yup, fluid buildup in my brain. Cue the introduction of Ocrevus, the shiny new drug on the market that “everyone’s having good results with.” Were they, though? Or was that just the medical equivalent of crossing your fingers and hoping for the best?
See, having worked in healthcare, you get a front-row seat to the backstage bullshit. When a doctor tells you “they’re seeing good results,” sometimes you have to wonder, “are they really, or are they just buying time?” With Ocrevus, I felt like the lab rat in some pharmaceutical experiment. Sure, they might “slow the progression,” but at what cost? I was fed up with the trial-and-error game. First, you try one medication, and if that doesn’t work, you’re handed another, and another. It’s like a morbid version of medication roulette, except the stakes are your body, your brain, and your sanity.
Side effects? Oh, let me tell you about the side effects. Fatigue that knocks you flat on your ass. Not “I need a nap” tired, but “I physically cannot move” tired. Then came the spinal pain a few days after my Ocrevus infusion. Every. Single. Time. My back felt like it was breaking. And what do they say? “Oh, that’s normal.” Normal? NORMAL?! What the hell are they putting in this stuff? We’ll never know, will we? They could be injecting me with literal poison and just tell me it’s for “slowing the progression.” And that’s the kicker—medication for an autoimmune disease is supposed to help our bodies, but what we’re really doing is pumping ourselves full of toxic crap to see what sticks.
It’s a trial-and-error process. Some of us tolerate one drug, others don’t. There’s no rhyme or reason to it. It’s like a twisted guessing game where your body is the board, and the drugs are the dice. And guess what? YOU’RE the guinea pig. You’re the one who has to sit there and deal with the fallout when something doesn’t work. And the doctors? Well, they “try” something else. Wash, rinse, repeat. But why the hell are we the ones carrying the burden of that trial and error? Shouldn’t they know what works by now? Shouldn’t they have more answers than questions? But here we are, still asking, “Should I even be taking this?”
The truth is: the answers aren’t clear. No one really knows everything about autoimmune diseases—least of all the people making the medication. It’s a game of hope, of trust, of blind faith that what we’re doing is going to make some kind of difference. So we grit our teeth, take the damn drugs, and hold on to the hope that maybe—just maybe—this one will work. And if it doesn’t? Well, there’s always another one to try.
What choice do we have?
