Chronic Illness (and How Bureaucrats Failed Me)

I feel something in the pit of my stomach — well, colon actually — that’s ripping me up inside: anger. Anger over the lack of care people with medical issues face in this country. There is a lack of compassion and understanding toward those who are chronically ill. There is a blanket generalization given to those with chronic health issues claiming that all it takes is “taking better care of yourself” to get past it. I would know because I am one of those people. I’m chronically ill, and the system failed me when I needed them the most.

In January, 2019, I was diagnosed with ulcerative colitis. Ulcerative colitis is an autoimmune disease that sparks ulcers in the colon (no brainer, given the name). It’s in the same family as Crohn’s disease and IBS. However, I see ulcerative colitis — UC — as a distant cousin the family. The medical community barely acknowledges it. Think of that one family member no one wants to talk to — that’s UC.

Growing up, I always had stomach problems (thanks Mom). But, when I was diagnosed, I was attending a college that was highly rigorous. The stress of maintaining my good status caused my stomach pains to persist so much to the point where I was barely eating, had blood in the stool and dropped about forty pounds over the course of three months. I received my diagnosis and was put on prednisone, which helped me for a considerable amount of time and I stopped taking it due to it being a steroid giving me long term effects, like hair loss. With all steroids, this was only a band-aid for a puncture wound.

My symptoms started to gradually come back, and I went about my life, thinking it was just “normal” since it wasn’t as bad as before. I kept myself busy with work to distract me. I had a colonoscopy in September, 2021 and my doctor informed me my ulcers were the worst they had ever been. Despite this diagnosis, I ignored what he said. As long as I could still function, I thought it would be fine. Before you know it, I was placed in the emergency room due to an iron deficiency, and I was forced to take a medical leave from working. Recommended by my doctor, I decided to get on state disability.

Looking back, it took me a long time to get the help I needed because I didn’t want to admit that my illness was catching up to me. I thought I had finally made a transition to get my health and life back together. But, surrendering to my illness only made me get into other battles that would take up to a year. The One-Year War, I call it. It was in this one year that I really began to notice all the ways the corporations that be — Big Pharma and the government — play card games while the rest of us hope the odds are in our favor.

Beyond surface level understanding, it takes a lot of observation to see how these big corporal entities play a role in our country. They were the yin and yang in my One Year War. After my emergency room visit, I filled an application with the California State Disability office. Little did I know I was about to be subjected to being kept in the dark of my own survival. To start, I filed my application in January, 2022 and it didn’t go into effect until April. There was a whole three month gap where I didn’t receive a penny. I left my minimal 9-5 job ultimately to not have a consistent cash flow.

This deficiency became a consistent pattern throughout the One-Year War. I would receive a huge payment and then go months without being caught up on. Calling the phone number didn’t help. I would have to jump through hoops to follow the telephone trail it led me on. If I had to hear “we care about your call” again, I would’ve probably gone on a social justice-type rampage. It took me driving down to the San Diego office — I live an hour away — to get any kind of response. The ordeal makes me grateful I don’t live in the mountains.

The One-Year War also taught me that the medical industry is always playing cat and mouse with its patients. To start, I was first prescribed Humira, which is a self-injection medicine I would have to take weekly. I hate needles, so I feel as if I should be given financial compensation for the emotional turmoil alone.

On a serious note, dealing with my prescription was also difficult. My insurance would veto it because it was “covered” by them, which prompted my doctor’s office to send over the prescription repeatedly to the CVS Speciality pharmacy. The kicker is that Humera ultimately didn’t work for me. The medicine would fade away in my system before it could start healing the ulcers. After spending 10 months on it, I had to go back to the drawing board, and my doctor’s office wasn’t exactly eager to help.

Around the holidays, I went in for a routine check up with a new doctor (I came to see all the doctors in the office throughout the One-Year War). The Humera had only provided a little release. Instead of running to the bathroom up to ten times a day with mostly bloody stools, I went down to 5-6 times with bloody stool. I mentioned it to the new doctor, who took it as a sign that I was “progressing” and wrote to the State Disability that I was ready to go back to work when I wasn’t. I appreciate doctors for what they do and understand that they are constantly receiving new information on things, but the fear of not knowing how I was going to have money became too much. After much back and forth via phone calls and last minute blood work, I proved to the other doctor just how not ready for work I was and how something needed to change.

I spoke to the main doctor of this office, who decided to put me on Rinvoq, a tablet medication. When I tell you the difference was night and day, it’s not an exaggeration. Rinvoq has ultimately put my life on track, and I’m grateful to that doctor for taking initiative. If only it had happened sooner.

As I reflect on the One-Year War, I can think of so many moments where getting my health on track could’ve happened sooner. It makes me feel like I wasted a whole year. There are people who spend years of their lives fighting these battles. There’s an aura of superiority from these higher institutions that make chronically ill people feel unworthy of getting the help they need. Too much money is at stake for these institutions to be frivolous with it. As Cardi B once said, we can fund two wars but not healthcare. Currently, both Democrats and Republicans don’t support Medicare for All. While this proposal has its pros and cons, this issue is important and exploring a third-party option would potentially help put this into place. Frankly, given that both major parties are at a standoff, it’s better to shake the table than worry about ruining it.