Transitioning from Diagnosis to Severe RA
My previous article described my diagnosis with Rheumatoid Arthritis in October 2018. Written recently after my diagnosis, that article captured the feelings of confusion, chaos, and grief that a new diagnosis can inspire in someone. Now that a few months have passed, I want to write a revision and update to my previous article, "Things That Fall Apart Can Be Sutured Back Together". Unfortunately, while I have found a somewhat successful treatment plan, my condition has all but worsened, prompting another shift in both my treatment and in my understanding of myself and this condition.
The biologics talk
My first appointment with my rheumatologist after my initial diagnosis--which ironically was on my 22nd birthday-- revealed a particularly nasty development. After listing my current symptoms and comparing my x-rays, my rheumatologist noticed that the joint damage I was experiencing was rapidly advancing, forcing him to label my condition now as severe RA. This came as quite a blow. I knew that my condition was not exactly improving (perhaps there was a layer of denial in accepting RA in the first place), but I had no idea it would progress this much, so much to the point my rheumatologist recommended that I begin taking Humira.
Hearing this recommendation from my rheumatologist left me shocked. I was confused, upset, tired; I felt misunderstood and as if the past three months had been a blur. I had only just been diagnosed with a disease that is profoundly life-changing, and now, in such a short time, it had progressed to the worst form of the disease. I felt I had taken so many steps backward from where I had been in October. I had no idea what to do; I was lost.
What did severe RA mean for me?
After expressing my concerns with my rheumatologist, I nevertheless agreed to the Humira prescription. I knew it was the right thing to do, but nevertheless, I expressed my concerns about taking such a strong medication. In addition to the potential corporeal ramifications of this biologic, I felt some traces of shame and guilt in beginning this biologic. This mostly stems from the rhetoric that we use to talk about Humira treatment. We're all aware of the Humira commercials that are primarily targeted for elderly populations. In many ways, as someone who is so young, I feel somewhat isolated from the target demographic of these commercials: it adds another layer of confusion and self-consciousness to my experience with RA. It causes me to be aware of how serious this condition is and how much my life has had to change because of it.
More importantly, when we listen to those Humira ads, we often hear the announcer say: “Talk to your doctor about taking Humira for your moderate to severe rheumatoid arthritis…” When I hear these ads, I think to myself, “what does that linguistic shift in the quality of RA mean for how I construct myself? What are the physical ramifications of calling this disease severe RA and how does it affect how I tell the story of my body?” In asking these questions, I think about how my body has become subjugated to different situations of language. I think about how much my body has experienced in such a short time: how my body has become a site of change, of medication, and, uniquely, of strength. I am therefore reminded how my body becomes something to be written out, spoken about, negotiated, and disseminated throughout the ether of this existence.
What have I learned so far?
Despite the negative feelings surrounding the worsening of my RA, I am forever thankful that medications for this disease have significantly improved over the past few decades. I know that without Humira (and other biologics), many sufferers of RA would be in a worse physical condition and would, therefore, have a decreased quality of life. I know that Humira will make me stronger and will ultimately improve my condition. I have to remind myself that I walk this delicate balance between the advances of medication and the social stigma that arises from those medications. My goal both in my life and in dealing with this condition is to always be thankful that I can grow and learn from these experiences.
Have you shared tips on how to manage RA with anyone before?