I believe in science. I want to start with this statement because I know discussing health, medications, diseases, and doctors and their recommendations are sensitive during this time of pandemic and vaccine hesitancy. As a matter of fact, I’ve always held a deference to expertise. I’m the Locke to most people’s Hobbes, a true optimist and believer, maybe even a little too trusting. I’ve always thought that when you go to a doctor, that expert would be able to assess your ailment and immediately map out a plan to either cure you or ease your pain. I’ve always held these same beliefs in government and their duty to protect citizens. When I joined the U.S. Army, I felt it was the noblest of causes. I can’t say I’ve always trusted business in the way I trusted medical professionals and government institutions. I’m an MBA so I understand that shareholder wealth comes first, and greed is an addicting drug. That said, I truly believed that my medications were well regulated by government and there would be no surprises. These are the principles I held as I navigated my life as a chronic illness patient and were fundamental to how I reacted to my illness, the endless attempts to get me into remission, and later the drug reaction and its effects on my body. I finally accepted my illness and disability at the same time I became a skeptic. I learned doctors are not infallible beings, they are human, both the government and science have limitations, and pharmaceutical companies are balancing the need to get a drug to the market first or early enough to make an impact on patients while also identifying possible side effects. My journey from optimism to skepticism took years but there were some key moments that made me who I am today. These were moments that made me confront my reality and the reality of chronic illness patients and our relationship with medical professionals, pharmaceuticals, and government.
I’m toxically optimistic, you may call it denial. The first time I lost my optimism was 2017 and I had completely lost my ability to run and spent nearly every moment in excruciating pain. I was in a Crohn’s flare that was so severe, I could not even leave the house. I had a colonoscopy scheduled at Walter Reed Hospital to check for any changes and I just knew my doctors were going to find “it”. I even had plans to start training for the Marine Corps Marathon the week after my colonoscopy. I don’t know what I thought “it” was, but I was confident enough that I believed I would be training for a marathon the very next week. When I arrived for my colonoscopy, there was some confusion and scrambling and that’s when the reception broke the news to me, I had been bumped for Mike Pence. I usually tell this story with a few more expletives but I’ll refrain for the purposes of this article. I can’t remember much after this moment. I think they were trying to reschedule me for later in the day. I vaguely remember my husband telling me he’d take care of the rescheduling or something to that affect. There was something about that moment; the sting of reality, the burning of truth and acknowledgment in my stomach, the bubbling of anger that was held so deep it was like a volcano preparing to erupt, and then I erupted. In the middle of Walter Reed Hospital, I fell to the floor and started crying. Uncontrollable, wailing, loud, crying. Nurses were running toward me, patients were looking at me in horror, my husband was doing his best to console me but there was no use, I knew the truth. This was the first moment I realized that there was no silver bullet or “it”. I don’t know what it was about being bumped that made me lose my optimism, but it took me months to grieve my reality before I started looking for a new GI to start the process of trying to get to remission again.
My new GI started me on Humira every week. I didn’t know how this would end (and it did end spectacularly catastrophic) but I was willing to give my new treatment plan a try. It took about 6 months, but I was in remission and back to toxic optimism. I immediately started training for my next race and planning my return to “normal”. Unfortunately, the next three years would expose so many ugly truths that I had no choice but to accept my illness and disability and even this optimist found skepticism. The first ugly truth came during the pandemic. I locked down early in 2020 as instructed and just assumed that the vulnerable would be taken care of as soon as there was a vaccine. During this time, I was certainly becoming a bit more Hobbesian. It seemed half of the country was calling for my death so they could go to the bar while the other half was using the immunocompromised as a political football. (I was publicly shamed by the second half for running outdoors, thanks for the support) I stayed pretty positive though until the vaccine came out. Like everyone, I was excited to get back to life and just assumed after medical professionals on the front lines were vaccinated, immunocompromised would be next. Why wouldn’t I believe this? We were frequently the justification used for lockdowns and masks and we were the most vulnerable. The reality though was we were in the 3rd group. THIRD. Medical professionals were first but not just those on the front lines as one would expect, anyone who was medically adjacent was eligible for the vaccine. I watched as the “What about the immunocompromised” crowd started getting vaccinated, tagging each other on Facebook to thank someone for the hook up, and taking selfies at the gym. I kept thinking of my immunocompromised friends who were struggling to pay rent because they couldn’t leave the house or who had to choose between taking a chance being exposed to COVID or not be able to pay bills and I was angry. I immediately started calling my representatives. They responded with a canned press release. No concern for the immunocompromised or how this was rolled out at all. I was officially Hobbesian.
I finally reached full acceptance of my disease and the reality of doctor’s limitations after my reaction to Humira. 19 months, multiple doctors (including my prescribing), RNs, PAs, NPs and no diagnosis. Doctors do not have all the answers. I finally accepted reality, I’m sick and I always will be sick. I’m not going back to my old healthy, athletic self. This is who I am and moving forward with my life means moving forward with accommodations for my illness. I also realized that the FDA didn’t warn me of every possible side effect and doctors were so ill prepared to identify relatively common reactions to my medication that I suffered for almost 2 years. I understand that every medication comes with a risk. I just assumed that doctors would understand those risks and be able to identify when a patient is experiencing a reaction. There is a chaos and hopelessness to having an illness with no cure and no certain treatment plan. After experiencing drug induced lupus, I can say it’s even more hopeless to learn I have something that doctors don’t fully understand. I’m not anti-science. I still believe doctors have some answers, not all. I now explore all options. I even try homeopathic options. A little bit of efficacy is in order right now. I rarely hear a medical professional say, “I don’t know” or “we’re not certain”. The FDA still hasn’t responded to my reports on the side effects I experienced. I’m also not sure I’ll ever stop being skeptical of government after these past 3 years. They say you should never meet your heroes. It’s been a difficult process but I’ve met them and now I’m ready to deal with life moving forward knowing my heroes have flaws. They are only human and science has only come so far. I know I’ll find my toxic optimism again. It’s my Achilles heel. Now, if only my heroes could admit that arrogance may be theirs.