The information shared in this post reflects my personal experience as a patient and board-certified patient advocate. It is not intended as medical advice and should not replace guidance from your own healthcare team.
Through a thoughtful conversation with my amazing rheumatologist (they do exist!), it was decided that it was time for a biologic for my non-radiographic axial spondyloarthritis. I sat in stunned silence after the appointment and did something I am not proud of: I started bargaining.
Some of these may feel familiar to you:
“If I just cut out starch, my inflammation would calm down.”
“If I just ate cleaner, exercised more, then I could avoid this.”
“If I just never drank alcohol, I wouldn’t need this.”
“If I just had a higher pain tolerance.”
That last one stung.
I had spent the previous week in a terrible flare. I struggled to walk normally. Heck, I couldn’t even sit on a toilet without tearing up from the pain in my SI joints. I couldn’t roll over in bed without a pain spike that took my breath. But I went years, like so many of you, being told that “no way you have an autoimmune disease” and “Just go to therapy” and “You need to exercise more” and my all-time favorite “Quit seeking specialists and move on with your life.”
And now I have a trusted provider telling me I need to start doing an IV infusion every two months to get this disease under control. It’s like my past self couldn’t comprehend what I was hearing now.
I have MRI-confirmed sacroiliitis. I had failed two NSAIDs. My cardiologist suspects my heart symptoms are tied to the same autoimmune fire. My new, horrible rib pain is likely costochondritis – another gift of the disease.
And my brain’s response to all of that was maybe I just need to eat less bread.
If you have ever been recommended a biologic, a new immunosuppressant, or any treatment that feels like a big escalation, I am willing to bet you have done a similar version of this spiral. And I think it is worth talking about.
Why We Bargain
Treatment escalation is heavy. There’s something about crossing into “bigger medication” territory that makes the disease feel more real and serious. For me, I thought as long as I’m managing on an NSAID, then I’m not that sick. Maybe this flare is just a rough patch.
The “if I just” thoughts are our brains trying to find a door out of a scary room. And that’s totally normal.
Let’s Dismantle Some Common “If I just..”
“If I just cut starch.”
Low starch diets have some anecdotal support in the axSpA community. The peer-reviewed evidence for using diet alone to replace biologic therapy in active disease with MRI-confirmed sacroiliitis? Much thinner. Diet as a complement to treatment is a great idea. Diet instead of treatment may not be recommended by your provider.
“If I just ate anti-inflammatory foods.”
Same answer. Anti-inflammatory eating is genuinely worth doing. I think everything is worth trying (within reason). But no amount of olive oil and turmeric are reverse joint abnormalities due to my disease.
“If I just had a higher pain tolerance.”
I think it is the most insidious of the bunch. Pain tolerance has nothing to do with disease progression. It has nothing to do with the inflammatory process attacking my SI joints. The idea that I could just toughen up and opt out of treatment is gaslighting dressed up as strength.
What Treatment Escalation Actually Means
It means your disease has progressed to a stage where the tools you have been using are no longer enough. It means your doctor has looked at your full picture and decided the risk of undertreated disease outweighs the risk of the medication. That is a clinical judgment made by someone who went to school for a very long time and knows your case.
It means you have options, and options are a great thing!
The people in my autoimmune support groups almost universally say the same thing: they wish they had tried XYZ medication sooner. Not because the medication is magic or risk-free, but because the years they spent managing on less were years of damage, flares, and progression that didn’t have to happen.
Replace Giving Up with Leveling Up
Accepting a higher level of treatment is one of the bravest forms of self-advocacy there is. It means you are taking your disease seriously. It means you are choosing your future self over your current fear.
The “if I just” spiral is a normal stop on this journey. Feel it, name it, and then let it go.
Looking for more patient advocacy resources? Check out: https://resources.littleenginepatientadvocacy.com/
Little Engine Patient Advocacy 
Leave a comment