Living with chronic illness means becoming many things I never expected to become.
Patient. Advocate. Researcher. Medical record keeper. Appointment coordinator. Professional phone hold specialist.
Seriously, if there were Olympic medals for sitting on hold with insurance companies, some of us in the chronic illness community would be standing on the podium with gold around our necks. 🏅
One of the most frustrating parts of living with Crohn’s Disease and Myasthenia Gravis isn’t always the diseases themselves.
Sometimes it’s health insurance.
Or more accurately, trying to convince health insurance companies that the conditions diagnosed by my doctors actually require treatment.
Make it make sense.
🩺 When Insurance Knows More Than Your Doctor
Because apparently, in the world of medical insurance:
- My doctor needs to prove I need the medication they prescribed.
- The prescription itself isn’t enough.
- A specialist who has treated me for months or years may recommend a treatment, but first another doctor—who has never met me, examined me, or reviewed my entire history—must decide whether they agree.
Make it make sense.
I’ve also learned that before receiving the medication my specialist believes is most appropriate, I may first have to fail medications they already know are unlikely to work. This practice, often called “step therapy” or “fail first,” requires patients to try less expensive treatments before insurance will approve the medication their physician originally prescribed.
So the plan is to knowingly try treatments that may not help, simply to earn access to the treatment my physician recommended in the first place?
Make it make sense.
And don’t even get me started on prior authorizations.
Nothing says, “we trust your medical team,” quite like requiring mountains of paperwork, multiple phone calls, appeals, peer-to-peer reviews, and enough documentation to fill an entire filing cabinet.
💨 Apparently, Breathing Is Optional
Then there are the moments that leave you staring at the phone wondering if you somehow entered an alternate universe.
Before receiving my Myasthenia Gravis diagnosis, my pulmonologist believed my breathing difficulties were caused by asthma. Honestly, that conclusion made perfect sense at the time. I had been living with asthma since childhood, so when I began experiencing significant breathing problems, asthma seemed like the logical explanation.
To help manage my symptoms, I was prescribed an inhaler.
Simple enough, right?
Wrong.
The insurance company denied coverage for the inhaler because it contained 200 puffs instead of 90.
Never mind the fact that my physician prescribed the 200-puff inhaler because I was instructed to use it four times a day, two puffs at a time.
Apparently, basic math was not invited to the conversation.
So let me make sure I understand this correctly: I was struggling to breathe, my doctor prescribed medication based on how frequently I needed to use it, and the insurance company’s response was essentially:
“No, that’s too much breathing.”
Apparently, my lungs and the insurance company had very different ideas about how often I should be allowed to breathe. 😂
Make it make sense.
🚫 Words No Chronically Ill Person Wants to Hear
Over time, I’ve become all too familiar with certain phrases no chronically ill person ever wants to hear:
- “Not medically necessary.”
- “Out of network.”
- “Incorrect coding.”
- “Denied.”
- “Not covered.”
As someone living with multiple chronic illnesses, these words aren’t just administrative terms.
They can mean:
- Delayed treatment.
- Unexpected expenses and difficult financial decisions.
- Worsening symptoms.
- Disease progression.
- Stress.
- Fear.
And in some cases, they can mean the difference between functioning and not functioning.
💉 The Cost of Staying Alive
Earlier this year, a change in insurance coverage interrupted my Rystiggo treatments for approximately seven weeks. Seven weeks may not sound like much, but when you are living with Myasthenia Gravis, seven weeks without treatment can feel like an eternity.
During that time, my symptoms worsened significantly. Breathing became harder. Fatigue increased. My body reminded me very quickly what happens when necessary treatment is delayed.
And the challenges didn’t begin there.
Before I could even start Rystiggo treatment, I was informed that my insurance provider would not cover the full cost of treatment, including the home infusion services required to administer the medication.
The treatment costs approximately $12,000 per infusion.
For many families, that amount is more than a mortgage payment, a year’s worth of groceries, or even an annual salary.
Let that sink in for a moment.
In order to access a medication that could quite literally save my life, I found myself searching for ways to pay for it.
Thankfully, the manufacturer offers a patient assistance program that helps cover the cost for eligible patients. Without that program, I honestly do not know how many people—including myself—would be able to access this treatment.
The same was true years earlier when I began Remicade infusions for my Crohn’s Disease. Once again, patient assistance programs helped bridge the gap between needing treatment and actually being able to receive it.
While I am incredibly grateful these programs exist, I cannot help but wonder: why are medications that can preserve quality of life—or even save lives—allowed to remain financially out of reach for so many people in the first place?
Make it make sense.
⚖️ The Real Cost of Insurance Decisions
The experience reinforced something many chronically ill individuals already know:
Insurance decisions are not made in a vacuum. Real people live with the consequences.
I understand that insurance companies must have systems, guidelines, and processes.
What I struggle to understand is why those processes so often create barriers between patients and medically necessary care.
Healthcare should not feel like solving a complicated escape room while symptomatic.
Yet here we are.
Patients should not have to become insurance experts simply to access medically necessary care.
Yet for many of us living with chronic illness, advocacy is no longer optional—it’s a survival skill.
💜 To My Fellow Chronic Illness Warriors
To my fellow chronic illness warriors currently fighting insurance battles:
I see you.
I see the hours spent on the phone.
The appeals.
The paperwork.
The tears.
The frustration.
The exhaustion.
And if no one has told you lately, you shouldn’t have to fight this hard just to receive the care you need.
As I sit here writing this entry, the phrase “make it make sense” keeps running through my mind on repeat. Apparently, my brain has decided that is today’s soundtrack. 😂
Because honestly?
Sometimes surviving chronic illness feels easier than surviving the insurance process—and that is a reality no patient should have to face.
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries. Whether you are living with chronic illness, supporting someone who is, or simply seeking understanding, thank you for being here. My hope is that by sharing my experiences openly and honestly, others will feel seen, supported, and a little less alone.
Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜
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