A common misconception about pain patients is that the worst part is being in pain. However, I would argue that the equally difficult part of being a chronic pain patient is being constantly disbelieved and gaslighted by society and especially by medical professionals. Today, I am going to give you a glimpse into what it’s like to be a pain patient.

Chronically Uninsured

I have been trying to figure out why my anxiety has been higher than average lately, and today it finally hit me. It’s because as of yesterday, I no longer have health insurance. See, I graduated with my B.S. back in May, and I had insurance through my university. Three months is a short time to find a job that offers the benefits of health insurance, let alone during a pandemic.

As a chronic pain patient, I must go to monthly appointments at a pain management clinic to get access to the medication that allows me to function. Now, until I get new insurance, I’ll be having to pay $250 every single month for a less than fifteen-minute office visit just to refill my medications. Then, I’ll pay the full price for my pain relievers and anti-inflammatory medication.

I won’t be able to afford to get my nerve block and trigger point injections into my neck, meaning my migraines and neck pain will likely spiral out of control quickly.

I have been without health insurance before, and it is not fun. 0/10 would not recommend.

I am SO passionate about pain research, advocacy, and patient education because I know what it’s like to be on the other side of it from being a pain patient.

Pain management should not be a luxury that only the privileged have access to, but unfortunately it is. We deserve to live as pain free as possible without putting ourselves into debt.

Pain management should not be a luxury that only the privileged have access to, but unfortunately it is. We deserve to live as pain free as possible without putting ourselves into debt

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Chronically A Patient

When I was younger (end of high school and into the start of my undergraduate degree), I:

• went to physical therapy three times a week
• had monthly pain management clinic appointments
• either monthly, or once every two to three months I would have appointments with:
  • rheumatologist
  • neurologist
  • cardiologist
  • gastroenterologist
• would frequently get medical imaging done
• had monthly infusions for migraine
• would be on anywhere from 5 to 10 different daily medications at a time,
• with weekly self-injections of a biologic (Embrel) used to treat autoimmune diseases
  • the injections would make me extremely dizzy, tired, nauseous, and weak for the rest of the day, so whichever day I took it on, I could not do anything else.
• had to take Methotrexate once a week, which is an immunosuppressant and a pill form of chemo used to treat rheumatoid arthritis
  • Because of the methotrexate, I had to get weekly to monthly blood tests done
  • The medicine would make me so sick that I would have to take it on a Friday night after school so that way I could use the weekend to “recover” from the side effects.  

The treatments took up so much of my time, energy, and money. I almost flunked out of college, sunk into a deep depression, and was practically bedridden most of the time.

Still, I did not “look sick”, so I often would not get taken seriously by medical professionals.

Chronically Denied

I tried applying for disability at this time, because it was when I was at my sickest. The application process was grueling, time-consuming, and dehumanizing. I had to get even more imaging done and see multiple doctors of the state’s choosing. I had to fill out mounds of paperwork, taking hours upon hours to complete.

But, still, I went through the process.

During this time, I did not have health insurance. But I needed a referral letter from a doctor in order to start my disability case. I had just moved across the country, so I first had to go find a new in-state general practitioner, pay out of pocket to be seen, just to get a letter signed stating I had been seen.

So, with the letter being signed, I gathered up my years of medical records into a binder, and off I went to see the doctor appointed to me by the state to “evaluate my case” three months later after having some imaging completed.

The office was in a space that shared walls with a pawn shop and felt more like the DMV than a medical practice.

The front staff seemed annoyed at my very presence. The person working at the desk did not even take their eyes off their screen, handing me a clipboard with a thick stack of papers. Still, I smiled and asked what I was supposed to do next. “Take this. Take a seat. Wait your turn”, they scoffed, speaking to me like I was the most idiotic person they had ever met. It was as if I was inconveniencing them when I asked for a pen to fill out the paperwork, even though I had been asked to bring different pre-filled out forms. Hours went by, and it was finally my turn.

I was quickly shuffled into a small examination room, and in entered the already frazzled doctor.

Without as much as a hello, he asked “You are really young, too young to be in this much pain, and your imaging looks fine as well, so why are you here?”

Unsure of how to answer the question, I started listing my medical history and talking about how the pain impacts my life on a daily basis. Ten minutes later, the appointment was finished, and I was told that he would “file my report” and to be on my way.

A month later, I also had to see a government- appointed psychologist for a single “evaluation”, which went much like visit with the clinician went.

A few months after that, and I received a letter in the mail regarding the decision of whether I would be given disability. Based on how the appointments with the doctors went, I had a feeling I already knew the answer. But nothing could prepare me for the gut- wrenching reasoning behind my denial.

The letter simply stated that I was denied disability because I was deemed, and I quote “about well enough to work”.

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Chronically in Pain

As someone who suffers from chronic pain, I try to use my own experience to help others who are in similar situations. Society frequently dismisses pain as “all in your head.” Experiencing the frustrations brought on by pain’s isolating nature inspires my desire to raise awareness.

I strive to help break down the stigma connected with chronic pain and mental illness by honestly discussing my own problems in managing life as a pain patient in everyday life and throughout my career as a scientist.

To read more about my journey of getting a diagnosis being young and having chronic pain, see the blog post I wrote for PRF (Pain Research Forum) “Too young to be in this much Pain“.

To read about having chronic pain as a young scientist and scholar, click here.