The Complex Patient: Surviving a System That Wasn’t Built for Us

A friend convinced to switch my major in college from social work to nursing. It was the best decision and I have thanked her many times. I love my nursing career and have been able to see the healthcare system from all angles.

Being a patient is my least favorite side. I am very good at taking care of others, providing education, guidance and compassion. When I am sick, I falter.

I was born with two genetic diseases that I was able to manage fairly well until my 40’s, although I required several surgeries.

Then in my 60’s I was diagnosed with an autoimmune disease. Next came the second autoimmune and then the third. Multiple autoimmune diseases often occur together for different reasons: genetic, HLA genes, environmental factors and immune system dysfunction.

Here is where it becomes so tangled. Medicine is an art, not a science. I know not all will agree.

No one physician treats all of my medical conditions. Each one requires a specialist, although the autoimmune diseases theoretically could be treated by a rheumatologist.

Due to one of my genetic traits, I do not tolerate many medications. I have been sent to specialist after specialist. Major academic center after center. I have been across the country and back.

I have been told by some of the best specialists that I am “too complicated”, “very interesting” or just “I’m sorry, we can’t help you”.

Next month, I will be traveling yet again, to another specialist, who hopefully will be able to manage my most problematic autoimmune condition.

Medicine has become so siloed. I have all these specialists who don’t talk to each other. I get it. No one has the time to have lengthy discussions with another provider about a complex patient. Health insurance dictates the number of minutes a physician gets to spend with each patient. They are all overloaded.

I have worked for many years with physicians. Most really care. Our system is broken. Patients like me are unable to receive the care they need.

I am lucky because I have a medical background and I can advocate for myself. I’m a fierce advocate. I keep detailed notes, but time with physicians is always limited.

How do we survive in our present system? There are many of us out there trying to navigate this difficult scenario. I am blessed because I have a physician colleague who has helped me coordinate much of my care. And on to the next physician…