5 Tips for Surviving the Medical Industrial Complex

Defeated. Angry. Terrified. The enormous weight of emotional soup bearing down after being spit out by the Medical Industrial Complex was intense. Four weeks earlier, I had been told my spinal cord was so compressed that I could stop breathing at any time. Being rear-ended at low speeds could be a potential death blow, and waking up each morning was a blessing. The doctor made sure I understood how serious the situation was, and recommended a battery of testing.

After four near-accidents only to show up for testing that was never actually ordered, I had to literally plead with the doctor’s office to allow for the remainder of testing to be done at the hospitals close to my house. Something with this office just was not right. Finally the day of surgery comes, and I show up to the hospital ready for my c13 fusion and decompression! I was having trouble breathing and lost the use of my arms, so this was greatly anticipated! After a two-hour wait, we realized the doctor’s office never ran my insurance and I left the hospital in tears. This left me so upset I billed the office for my lost time. Sadly, this is not my first experience with the Medical Industrial Complex.

It took 11 more surgeons before finding one that wasn’t dismissive of my symptoms. On this journey, I met surgeons who even seemed to think they were amateur rheumatologists! One was sure my rheumatologist was horrible because I had hand damage (remember I was being seen for atlantoaxial instability) and had I been on biologics, I’d be a picture of health. This same doctor failed to recognize the only medication listed on my chart was a biologic, and neglected to ask how long I had rheumatoid arthritis/Ehlers-Danlos syndrome. Had he asked, he’d have known I have had RA/EDS longer than biologics have existed, and significantly longer than he had been practicing medicine. This was two years ago, and I found a great surgeon to perform the fusion and decompression.

Unfortunately, we had an involuntary insurance switch right after that and I no longer had access to that surgeon. Enter the Industrial Medicine Complex again. Right after the surgery, symptoms worsened. My pain levels increased, and we thought it was my rheumatoid arthritis. It wasn’t. I bounced from surgeon to surgeon asking for new imaging to be sure everything was OK, and was told, “See your old surgeon.” I’ve seen doctors all over the state. The Yale graduate told me to lose weight, exercise my core, and sent a note to my rheumatologist suggesting testing, yet never ordering it. Finally after two years, I found a neurologist who took my symptoms seriously and ordered testing. My cervical spine was shifting after the fusion/realignment, causing discs to invade the spinal cord and nerve root space. The symptoms being blown off were trigeminal and occipital neuralgia, absolute stenosis of c4-6, and a near complete impingement of the nerve roots coming out of the c5-6 vertebrae.

From autoimmuners to veterans to cancer patients, we commonly have our symptom dismissed by doctors who charge incredible fees. Patients are told to educate themselves, but are often chastised when they do. Publicly doctors encourage us to be advocates, but then make fun of our “Google degrees” while also using Google as a reference when they have no background on the conditions we have. Here are five tips for surviving the Medical Industrial Complex.

1. Learn about your conditions. We tend to think doctors know everything, and have all the current research. They do not. It is up to us as patients to stay up-to-date on the latest research and bring that information to our medical teams. If a provider says something that sounds off, please research it.

2. Your doctor is a team member, not a dictator. We have gotten used to hearing “take two and call me in the morning.” Health management is more than medicine, and is a balance of many moving parts. If your doctor acts like they are the dictator of your healthcare plan, and not a team member – find a new provider. They are charging a lot of money, so be sure their services are worth what you are paying.

3. Trust your instincts. Sometimes we feel inadequate and don’t speak up for ourselves. It is OK to bring up symptoms, and to make sure it is noted in the chart that you brought them up. Patients sometimes have serious symptoms that are dismissed. These lead to bad outcomes that could have been prevented had doctors listened. Always leave each visit with copies of your office notes/imaging.

4. Don’t be afraid to fire doctors. While insurance does cause some limitation with this, if you don’t like a doctor – fire them. Write those letters to the insurance companies, to legislators, and to the American Medical Association about these doctors. Yes, we will get the label “doctor shoppers,” but nothing changes otherwise. At more than $300 per hour in many cases, be willing to doctor shop. I shop around for lawn care, and they don’t charge nearly that amount. Your health is worth it.

5. Allow yourself to be human. This is not easy. It is mentally and physically exhausting. Many times we want to take the easy way out and give up. We want to accept the bad care. We want to give in to what this Medical Industrial Complex has become. Don’t. Lives depend on it. Your life depends on it. Your life is worth it. Allow yourself to be a human. Allow yourself to be mad, tired, angry, furious, depressed, and more. Just don’t park there. Pick up and Wonder Woman or Superman the heck out of this life. You’ve got this. It might not feel like it, but you do.