Navigating Sjogren’s and Health Care

Who knew my diagnosis would just be the tip of the iceberg? As if finding out I had an autoimmune disease wasn’t enough, I would be exposed to the complex world of health care.

After my initial diagnosis, I would be tasked with navigating the world of health care. First thing was getting a neurology appointment. Before then, all of my doctors were in the Main Line network. Upon calling the recommended doctors within that network, I was met with- what I would say- is unacceptable results.

Long waits and big roadblocks: Finding the right specialist

One doctor didn’t have an appointment until October, the second doctor was scheduling for November. Who could possibly wait that long to get information on what is going on with a brain tumor?

Having private medical insurance from my federal government employer paid off! I began googling neurologists. I called one I located at Penn and lucked up and got an appointment the next week. That would be the beginning of me building my care team at Penn. The neurologist would recommend an ophthalmologist and otolaryngologist.

Finding a rheumatologist proved to be a feat within itself. This entailed way more research and searching than to find the other doctors. I wanted to make sure to see one that treated Sjogren’s patients and maybe even specifically specialized in the treatment of this autoimmune disease.

The initial doctor I was seen by was over 20 miles away from my house. I didn’t mind the travel, but after the third visit, I didn’t feel like myself or my symptoms were being taken seriously. I was able to locate a rheumatologist at Penn that specialized in Sjogren's. There would be a 4 month wait for an appointment. I was ok with that as I knew I would be seeing someone that understood my condition.

Navigating Sjogren's disease health care expenses

This experience opened my eyes to the health care issues that many people face. I thought about the people who cannot see any doctor they desire. The people that would have to wait all of those months to see the doctor because that’s the only one their insurance will cover. Not to mention the costly co-pays that they would need to pay for seeing a specialist.

I spent thousands of dollars on copays. They ranged anywhere between $50 to $250 for MRI and PET scans. Though I am very thankful for my employment and my ability to get the treatment I need, I worry about those that cannot.

Systemic inequality and the emotional toll of patient advocacy

Shouldn’t we all be afforded the same access to adequate medical services? Isn’t this the land of freedom and equality? What if I get too sick to work one day? Where would that leave me? These are the things that I continue to struggle with.

I am so grateful for my care team and their support and dedication to keeping me healthy while navigating Sjogren's disease and all that comes with it. That doesn’t mean I have stopped worrying about those that don’t have access to the same.

The agony, anxiety and depression that they may experience waiting to see a doctor for a diagnosis is not a good thing. That type of stress can make someone ill. Isn’t that a catch 22? Shouldn’t the purpose be to get and keep people healthy?

It really amazes me and makes me wonder why things are like this. I encourage everyone, no matter the medical coverage you have to always be your own advocate for your own health!