Why New Treatments for My Rheumatoid Arthritis Give Me Anxiety

“I feel like I am getting sicker,” I said to my rheumatologist while holding back tears.

His reply to me was blatantly honest, “Your illness is chronic.”

I realized at that moment that I may have bought into the healthy world’s lie that “medicine” is used in the chronic illness community as a “cure.” I’ve been taking all my prescribed medications (and on schedule), but have felt a slip in my health and well-being for the last couple months. For nearly 10 years, I have been fighting to find the promised remission that few in the autoimmune disease world find.

But somewhere along the way I started to believe that I would be cured with all the medication I take. Instead, I find myself in the stark reality that once again my rheumatoid arthritis (RA) treatment is not working as effectively as it once did and it is time to try something new.

Like many warriors, I try to remain positive and an active participant in my health, but new treatment always brings a level of emotions that perhaps even providers don’t fully understand. Each time I have entered a new treatment option (and I have been through many), I’ve entered it with hope knowing that I have to give my new treatment option a chance. It is like entering a new relationship – leaving the past relationship baggage at the door and not taking out past failures on the new partner in your life. But, there is a level of distrust that sneaks into my mind and with that level of distrust comes anxiety.

Often warriors who find ourselves in this situation start wondering, “What is so wrong with my body that it doesn’t respond the way it is supposed to?” And the scariest thought that enters our mind, “Will my team give up on me because I am not a success story?”

And the anxiety we feel is sometimes intensified by our well-meaning healthy friends who make statements or ask questions like:

“I wonder why the medicine isn’t working?”

“Do you think you should consult with a different doctor?”

“I saw this medicine on TV and it says it is for your condition.”

All well-meaning questions and statements made by people who care, but it makes the anxiety we feel even worse sometimes. It has become obvious to us over the course of our journey that all treatment does not equal the success story displayed on TV commercials. Personally, I know my health has not gone the way it was supposed to with medications and I feel like that disappoints those around me. I sometimes want to publicly declare, “I am trying my best to get better.”

I really believed I had all the emotions of starting new medication figured out. I’m a veteran by chronic illness standards. I’ve told myself that I know enough to not buy into the “healthy world’s” judgments of the chronically ill. I know that they mean well with their ideas about my treatment or lack of response. But yet I find myself shocked at the realization that medication has failed once again to slow the progression of my condition.

So, if you are a chronic illness warrior, please know you are not alone in the anxiety you feel when a treatment option fails you or you have to change up your drug cocktail. It happens to all of us at some point in our journey. And even veterans of chronic illness feel the same emotions as the newbies when that happens.

We all enter new treatment with the hope it will be “the one” to give us our life back. We all feel skeptical of side effects and wonder if the benefits will outweigh the risks. But, the important part is to try. It’s also an important step in the relationship with our healthcare providers that we have a willingness to try what they offer us. But please don’t think that means jumping at whatever is offered without asking questions or voicing your concerns. You should always ask questions about new treatment and you should feel confident in the information your doctor provides before starting it. I even think speaking up about your new treatment anxiety is an important step in humanizing your patient experience.

To the healthy world reading this, I want to speak out for those in my shoes. Those commercials you see or the success stories you hear are great examples of when treatment works.  Unfortunately, that success is not always the experience for all chronic illness warriors. The medications we take do not equal cure and sometimes do not even equal remission. When our treatment fails us we feel a level of guilt that we didn’t become the success story. So a simple, “I am sorry your medication has failed you,” is all we need to hear from you.  That simple phrase means more to us than any other.

Photo by Ben White on Unsplash