The Difficulty of Finding a New Doctor When You Have Chronic Illness


Moving on after a provider drops you as a patient is a worst nightmare for those of us with chronic illness. It’s ranked up there with changing insurances when you have a pre-existing medical condition.

So. Much. Paperwork.

We loved our old PCP. She had a patient-centered approach, natural-minded… but that oasis didn’t last for long. For reasons unknown to me, she dropped her patient load and we were on the hunt for a new provider.

Finding a new PCP when you are on Medicaid is difficult. Their hotlines and websites are only so helpful; it’s up to you to Google all of their names and see how well they will match. This time we couldn’t find someone who was ideal, so I settled for close proximity – five minutes away.

My first appointment with this PCP, he disregarded my “out there” diagnoses that I had for my health. It was so frustrating! I waited in that waiting room, filling out that medical history form for almost an hour (#realtalk) and he had the nerve to suggest my blood pressure issues and widespread joint pain were probably just dehydration and sciatica.

This wasn’t my first rodeo, I knew my issues weren’t fleeting. He sent for lab work and I met him a week later for the results. The only thing “off” with my lab work was my vitamin D. He announced this, told me he would be prescribing me a strong supplement for six weeks. Then he asked if I needed anything else.

Um, are you kidding me? I thought to myself, because obviously I didn’t want to fight this man in front of my three children. Instead I just jumped into a five-minute long explanation about my health, from dysautonomia, to endometriosis, mitral valve prolapse, etc., and my extensive history with my former cardiologist, and subsequent research I have done over the last six years. All the while, I’m thinking to myself, “Why did I even bother filling out my history? It seems he didn’t read it.” He looked at me and asked, “How do you know all of this?” I blinked, “I read medical studies.”

From here, my doctor adjusted his perception of me and became my peer. I left that appointment with a referral to a new cardiologist and a prescription for a blood pressure medication. Since those awkward, off-to-a-bad-start appointments, we have been able to discuss my health open-mindedly. Just this afternoon we sat down together and I spoke very frankly, “I have been doing research… so this is what we’re looking at today, what tests do you feel we should do next?” He agreed, both of us knowing that I was opening a can of worms… and we proceeded to order the labs I wanted.

It is not easy being an advocate for yourself in a world where patients aren’t expected to lead the way… and honestly, we don’t always know which way to go! That’s why teamwork is a must. Finding a PCP who understands that you are a resource for them, and vice versa, is a treasure.

Of course, not every person who goes to the doctor has everything they read on wedMD… so I know doctors are going to do their due diligence. I want them to. I also want my fellow spoonies to feel like their voices matter, their hours of research matter – they matter.

Getty Image by demaerre


Find this story helpful? Share it with someone you care about.