You made it to the fifth and final installment of the mini-series, Making the invisible visible!
I share one invisible aspect per installment, so if you haven’t read the previous posts, you can check ‘em out here!
- Introduction to World IBD Day
- Invisible Aspect #1: Joint Pain
- Invisible Aspect #2: I Dropped Out of College
- Invisible Aspect #3: Hair Loss
- Invisible Aspect #4: Prednisone Weight Gain
Let’s wrap up this series that centers around World IBD Day’s theme:
“Making the Invisible Visible”
Dealing with Health Insurance
The fifth invisible aspect of my ulcerative colitis journey is dealing with health insurance.
Just by looking at me, no one would know that several weeks ago, I cried just about every day because my health insurance let me down.
I won’t go too deep into it (though I could probably write a book about it!), but in short, my health insurance company changed the number of pills I can pick up each month.
Without warning me. 😡
For many people with chronic illness, even missing one dose can potentially welcome pain or a flare.
So, upon discovering this news, I grabbed my phone and contacted my insurance company immediately to figure out how to fix it.
The Quantity Override Process
They said that my GI needed to fax over a quantity override form. So, I immediately called my doctor’s office and relayed that information. I also touched base with my pharmacist to see if everything matched on their end.
A Letter with Cited Sources
A day or two later I was given new information.
In addition to the override request, my GI needed to fax over my medical record, a letter explaining why I need a higher medication dosage, and links/sources to clinical trials and articles as scientific evidence!
I bet you can guess what I did. Without letting a minute pass by, I called up my doctor’s office and gave them this new information. I also started helping them with the process by researching articles for them to include in the letter.

Broken Fax Machines
In addition to my health insurance company calling me with additional info, there were broken fax machines, my doctor’s office incorrectly-completed forms, unhelpful member service reps, and an overall lack of urgency from my health insurance company.
At one point, I had to physically drive to my GI’s office, pay for parking, pick up the paperwork that wouldn’t go through their faxing system, and drop it off at my health insurance company’s main campus.
The amount of hoops I had to jump through just to get a simple antibiotic was utterly ridiculous.
Total Hours and Out of Pocket Expenses
It took nearly two weeks for everything to get approved. And I had to buy three days-worth of medication out of pocket, which totaled over $100!
In a matter of seven days, I spent thirteen hours on the phone with my doctor’s office, pharmacy, and the insurance company. Within a week, I essentially became the liaison between the three parties, as well as a scientific researcher!

Finally, the override request got approved and I’m now able to pick up my normal amount of monthly medication.
Why You Should Be Aware of This
It was a stressful and frustrating week. I don’t say this to scare you or to talk badly about insurance companies; I share this to warn you.
This process would have taken significantly longer if I wasn’t running point, making calls, and following up at least once a day.
As someone with a chronic illness, we ideally shouldn’t have to take charge. But, oftentimes, we have no other choice.
The point is: be resilient. Be bold. Assume that no else will take the reins.
Sometimes, we have to be the be ones to get the ball rolling, because, in the end, we are the BEST advocate for our health.
IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy circumstances that no one would know we go through unless we decide to share them.
And I choose to share my story because AWARENESS → FUNDING → RESEARCH → CURES! 💜💜💜
Photo by Andrew Stutesman on Unsplash
