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How a Comprehensive Care Team Can Help Change Your Health

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Living with a rare, chronic autoimmune disease has been a mash up of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for me and my support system.

There have been times where I have felt completely alone and scared about my future and how my health was going to look moving forward. There have also been moments where I felt so strong and capable. With the help of my physicians and caregivers, I was able to make educated, decisive, critical decisions in terms of my health and my medical treatment.

I really believe if you’re living with a chronic disease, especially if it is rare and does not have a cure — like mine — that you need to concentrate on your disease as a whole. If you want any kind of improvement in your health, preventive care is essential. In order to have the best and most complete care, I made sure I had a cohesive collaborative team of healthcare professionals.

Normally, if you are sick, you go to one doctor, usually your general practitioner. They examine you and listen to you describe your symptoms, and then prescribe what they think is the best course of treatment.

In the world of chronic autoimmune disease, that is not how it works at all. Autoimmune disease makes your own body fight against itself. Therefore, when you have symptoms that are bothering you, it tends to be more than one problem going on. In most cases, more than one body part is also affected. So going to a general doctor for treatment is not going to cut it.

I believe it is best to have a specialist for each part of your body that has active symptoms. Typically, that means two or more trips to visit several different specialists. I learned very quickly, especially since I have around a dozen specialized doctors, that these doctors need to at the very least communicate through email about my treatment as a whole. They needed to be on the same page and be informed about each other’s medical advisement. Otherwise, what was the point of treating me if everything wasn’t cohesive and communicated to all of my specialty doctors?

I also realized that having the best doctors in the country didn’t mean squat if they weren’t willing to communicate with all of my other care providers and come together as a united front to treat my disease completely and collectively. The first six years of treatment for my chronic autoimmune disease was a train wreck. I had brilliant, well-qualified doctors — don’t get me wrong. Still, my care was lacking that “whole body, total disease” concept, making my treatment process unorganized and incomplete in my opinion.

Eventually I had endured enough. I had a serious “family meeting” with my support system and we came to the conclusion that the care I was receiving for the past six years or so was not cutting it. I needed a change in a big way. It took me quite awhile to find a hospital with doctors that not only accepted my insurance, but also practiced the concept of cohesive care. Eventually I did, and my medical care has been on point ever since.

Last year, I was approached by the Steffens Foundation and Russell Sage College to be a keynote speaker and participate as a patient advisor on a medical panel. They also interviewed me for an event they were putting together to promote inter-professional education amongst medical professionals (students). I jumped at the chance to share my experiences from a patient’s perspective when it came to collaborative, cohesive care. The event was a huge success and really opened many eyes in regards to new ways to treat illnesses completely, using a team effort. I was shocked to see how many people were in attendance and how eager they were to hear my story and perspective. I was lucky enough to be asked back again this year to participate in this event. I was met with an overwhelming amount of respect and openness to learn from medical professionals and students. In the future I hope that other medical colleges will take a page out of Russell Sage College and The Steffens Foundation’s book and put together events like this to teach and explore the world of collaborative care. It has changed my life as a patient and really made my medical care much more functional.

The author sitting on a panel on a stage

For the first time ever, I feel like I am finally receiving proper medical treatment for my rare, chronic autoimmune disease from my head to the tips of my toes and I could not be happier and healthier. If you feel like your medical care could be better or you feel like something is missing when it comes to your treatment, speak up! It’s your body and your life that is on the line. You deserve to be heard and taken seriously, even if you have to find a different place of treatment to do so. You are in charge of your body and what goes in and out of it. Do not let anyone make you feel like you are overreacting or claim “it’s all in your head.” It is our right to receive the best care as patients, so do not be afraid to fight for that care.

Originally published: November 10, 2018
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