Fearing Infections When You're Taking High-Risk Medication for RA

I just got home from a biopsy. A fine needle aspiration, actually. A procedure to check the status of an unidentified mass in my lymph node, grown to an unreasonable size as a result of high-risk medication use for my rheumatoid arthritis. Of course, being an adult and a rational human, I cried in the midst of the procedure. Not because it hurt, not because I was upset – because sometimes the weight of a debilitating chronic illness presses a bit too hard on my chest, crushes me a bit more than I’d like. Staring at the hummingbird image on the hospital wall while a physician removed seven vials of fluid from my neck just sent me over the edge, and it all became too much.

Mine is a pretty common tale for those on biologic agents. The mass appeared five weeks ago. I actually assumed it was some random bacterial infection and paid little attention until week three (when the situation was unavoidable – I’d have to see a doctor). I got antibiotics from an urgent care physician who urged me to follow up with my specialist. I was lighthearted and joking until he told me he can’t identify the mass and is concerned about lymphoma. That’s when things got real. My rheumatologist got involved and shut down all treatment for RA until the mass was identified. We then went to ultrasound and reports and more photos to the doctor and then the biopsy… or the FNA. The process isn’t unfamiliar for anyone on high-risk medications. Rashes, bacterial infections, unidentified swelling – the barrage of bizarre things we patients pick up in the process of regular life is just part of the deal.

A support group I follow via social media asked recently for patients to share the hardest individual parts of chronic illness, the things that others don’t see in the patient struggle. This is a slam dunk answer for me – it’s fear. The constant fear that my disease is silently attacking some part of my body, the unanswered questions that may be another diagnosis lingering in the shadows, the fear that my medication (while holding back the RA) is actually leaving me open to deadly infections. Above all, the patient struggle is rich with fear of debilitation – both of physical and mental function loss and further than that, the ability to create a coping strategy fast enough to match the deterioration of the body. Hence, the crying in the hospital room… It all seems too real sometimes.

By the end of the procedure I’d found my resolve. I’ll face this challenge again, as will all chronic illness patients. The breakdown of the body is not what defines us. With that in mind, I did what I always do: wiped the tears off, wished the doctor well and thanked her for her time. Whatever the result, I have a week before results come in and I refuse to let fear take over. I have a life to live and illness or no illness, cancer or no cancer, I’m going to live that life, even if it means a little public breakdown every once in a while.

We want to hear your story. Become a Mighty contributor here.