You’re Not a Failure for Needing Meds

When I Google “I feel like a failure for going on meds,” a lot of articles pop up. But all of them refer to meds for mental illness, and I want to write about meds for physical illnesses. Autoimmune patients like me often feel a similar sense of failure.

This sentiment isn’t the same for all physical illnesses. I’m guessing people with diabetes, cancer, or HIV don’t struggle with it as much. But with many autoimmune diseases, such as ulcerative colitis, Crohn’s, rheumatoid arthritis, lupus, or multiple sclerosis, it’s common to pressure yourself away from medication, or to try and minimize the kind of medication you take. That’s because there are some autoimmune patients who can manage these illnesses without meds—at least for periods of time.

We autoimmune sufferers hear about others whose rigorous diet and lifestyle changes work for them, and we get excited. Maybe I can do this naturally! Maybe it’s just about working with my body! Maybe I don’t have to pump foreign chemicals into it!

But then, after years of experimenting, we often look back and realize we’ve been on a roller coaster of hope and disappointment. Reluctantly, we slink back to the doctor whose meds we had initially rejected. Later, if the first, mild meds don’t work, we slink back again and opt for something stronger.

When we do find a drug that works, even as our symptoms begin to diminish, we often wonder: Did I do something wrong? Why did I fail when others succeeded?

That was my own path. For my first couple years with ulcerative colitis, I did everything in my power to avoid going on meds, especially “serious” meds like Remicade, which I’m now on.

But eventually, I came to understand that diet and lifestyle just weren’t enough for my body. I had to admit meds were the lesser of two evils, the other being long-term damage to my colon if it remained inflamed. It was time to end my cycle of flares.

As I was making the decision to go on Remicade, my sister sent me a blog post called “How I Weaned Myself Off Remicade” by Erika McElroy. The author’s website has since been taken down, but at the time, I was excited to read her post. She’d been on Remicade a few years, if I remember correctly, but then had successfully gotten off it and stayed in remission.

This was heartening to hear. Doctors advise staying on Remicade once you go on it, and never quitting it unless it stops working. But even as I took the plunge and committed to this long-term drug, I still clung to the option of someday being drug-free.

A few years later, I checked in again with McElroy’s blog. She’d written a sheepish follow-up post, confessing that she’d recently restarted Remicade again after a bad flare. She said she felt like a failure. Her prior post had given hope to so many patients like me; now she felt she was letting us all down.

I commented, writing that I understood why she felt that way, but it wasn’t how I saw things at all. Her body was simply telling her it needed more than diet and lifestyle to stay in remission. She hadn’t done anything wrong.

By now I’ve been on Remicade five years, myself. Compared to my first two years of illness, I feel soooo much better. Things aren’t perfect—I’m still often tired—but I haven’t had a single full-on flare since going on the drug.

Remission has afforded me better health with each passing year. I’m able to eat more and do more than even a couple years ago, and I’ve recently started running again for the first time since 2015. My legs and body often feel strong.

I used to see meds as inherently chemical, toxic, and unnatural. I didn’t like the idea of putting “unnatural” substances in my body; I wanted to be “chemical-free.” Now that view has shifted. I think it’s unnecessarily purist. Plenty of natural substances are toxic—poisonous mushrooms, radon—and just because something’s made from a plant doesn’t mean it’s healthy or “natural” to ingest.

Meanwhile, plenty of synthetic substances enter our bodies all the time. Whenever we swim or bathe in chlorinated water, eat a hot meal with a plastic utensil, or put on sunscreen, we’re putting synthetic chemicals into our bloodstream.

And toxicity and ill health can even come from within our bodies—for instance, from the stress hormones we produce when we experience prolonged anxiety or anger. Likewise, disease, however “natural,” can wreak havoc if we fail to protect ourselves from it. In the age of covid-19, more and more people are recognizing that getting covid-19 would be worse for the body than getting the vaccine.

So my philosophy on meds has changed. When friends ask for advice about severe colitis flares, nowadays I nudge them to quiet the flares quickly, even if it means prednisone or another strong med. If you hope to experiment with diet and lifestyle, you can still do that later, I tell them. Get out of the flare first. Your body will still be waiting for you once things have settled down.

In my next post, I’ll be describing the long elimination diet I did to figure out my optimal diet. I did this diet after going on Remicade and getting out of my severe, dangerous flare. I do want others with colitis to be hopeful that diet can make an enormous difference in wellbeing; I just want them to also recognize that meds may still be necessary.

For most IBD patients, remission will probably involve diet, lifestyle, and the right meds. I’m guessing it’s similar for many other autoimmune diseases as well.

So: If you’re doing your best to practice self-care through diet and lifestyle, and you find that you still need meds, then congratulate yourself on all you’ve done. The truth is, you do have a disease, and studies show that most bodies can’t conquer these diseases with diet and lifestyle alone. Only a lucky few can.

Meds can be seen as an additional form of self-care. No sense of failure is warranted. You are normal.