Dr. A looked at me with a disappointed expression. “It is Crohn’s.” he confirmed. My illness that took three months to identify was one I’d have for life. I didn’t fully comprehend the magnitude of this. I did not understand what life with an autoimmune disease entailed. I didn’t know this diagnosis would try to put me up against a wall and define me like nothing else I’d ever experience. I had no clue.
Dr. A was prompt in explaining the next course of action. I had a diagnosis, and he had a drug: a biologic. Biologics are high-level pharmaceuticals that prevent the autoimmune inflammatory response from happening in the body. The goal of this treatment is to prevent the unwanted inflammation from happening in the small bowel, so it doesn’t become permanently damaged. That sounded reasonable to me, so we moved forward with obtaining the script.
This class of medication is uniquely regulated. I could not bring a prescription to my local Walgreens and take home an orange bottle of pills. It either needed to be supplied by a specialty pharmacy and delivered to my home where I’d administer my own injections, or I’d have to carve out several hours each month or so to receive an infusion at the hospital. According my my doctor, these medications are the most superior form of treatment for Crohn’s Disease available on the market today. They’re also incredibly expensive, and my insurance refused to pay for them.
I felt defeated. My doctor who had been working with me for months, and knew what I needed, could not get me started on the treatment I needed because of the insurance company.
Dr. A tried over the course of nine-months to get me on different types of biologic drugs. The insurance company said they wouldn’t pay for this treatment until I “tried and failed alternative forms of treatment first.”
I lived on high doses of prednisone. It was the only drug insurance would cover that quelled most of the inflammation. In an effort to “fail alternative treatments” I was prescribed immunomodulators and immunosuppressants (think organ transplant medications) that I took simultaneously. Dr. A was confident these medications would not work for me, but I had no choice but to take them and document their inefficacy in an effort to obtain coverage for the biologics.
Taking prednisone was like a double-edged sword. I was damned if I took it and damned if I didn’t. Without it, I experienced excruciating abdominal pain, but with it I lived with its ugly side effects. Over the course of 9 months I gained 30 pounds and struggled greatly with my emotional health.
On one occasion I was standing at my kitchen counter slicing fruit for my kids. As I carefully handled the knife I thought about how I could use it to take my life. I quickly became appalled with myself for having entertained such an idea. I immediately thought of my daughters having to grow-up without me and I was crushed beneath a suffocating load of shame I couldn’t shake. I felt like a failure as a mother.
I begged with nurses over the phone and to Dr. A at my appointments to help me. Find me another medication. Something. Their responses were always the same: “Yeah that’s normal. Prednisone can make you feel crazy.”
“So suicidal thoughts are normal with this drug?” I asked. “Yes, they can be.”
It was dark. It was hard. I look back and thank God for my husband’s fierce perseverance because I told him on more than one occasion that I was done. Being on this medication kept me in such a high state of stress at all times that I became physiologically unable to reasonably respond to typical stressors or normal disagreements. Because of this we had the worst arguments of our marriage during this season. It got to the point where I didn’t see how we could spend the rest of our lives together if it would always be like this.
When we’d disagree, it felt like waves of cortisol pulsing through my veins—racing through me so fast I could hardly process my own thoughts, let alone articulate them. Talking myself down felt impossible. A solution I often turned to was to take a drive around the block, giving me space from the environment, a space to myself, and an opportunity to calm down— that space allowed me to breathe deep and settle the storm raging inside of me.
I felt so alone and misunderstood. I felt let down by the doctors and nurses on my care team. I felt like I had no one in my corner, except for my husband, and he often bore the brunt of my hurt. These weeks were long and excruciating.
It would still be years before our family felt like we had completely climbed out of the dark valley, but in the meantime we learned to navigate this new territory better. We pressed into worship, we better tended to our emotional needs, and worked to acknowledge our new limitations. We approached disagreements differently and put intentional efforts into spending quality time together. It wasn’t perfect, but it prevented our marriage from completely falling apart, and allowed us to begin mending what had been so deeply strained.