Patients = Experts?

Birgit Bauer
Written by
Birgit Bauer

Have you ever heard someone say that patients are the experts when it comes to their own diseases?

I agree that as someone living with multiple sclerosis, I am an expert in my own disease. I know my disease and I know my body after 10 years living with MS. But are patients really experts? Do we know it all?

Sometimes if I visit self-help groups or look on social media, I wonder about this. While we may know our own symptoms, there is a lot of uncertainty around things like patient rights, laws and policies. There are many questions floating around – How does my health insurance make decisions about my therapy? What rights do I have at work?

These are things that we should know, information we need to make important decisions in our lives.

Education can help. I often think of the words of Nelson Mandela: “Education is the most powerful weapon which you can use to change the world.”

While we may not be striving to change the entire world, we, as educated patients, can know how to advocate for ourselves, how to stand up for our rights and how to make wiser decisions about our futures. For people like myself living with MS, it’s important for us to educate ourselves, important for our health and futures.

But how do we learn what we need to know? Here are some tips.

• Read the news! This is critical, and can help you stay up to date on the latest in healthcare, the latest in patient rights and the latest developments in eHealth and mHealth.

• Subscribe to blogs or newsletters from patient organizations, medical professionals, health websites or individual writers who cover topics relevant to your health.

• Join webinars and educational sessions offered online (or in person) from patient organizations.

• Follow medical congresses and conferences on social media for the latest news in future health solutions.

• Network! Use social media and your personal network to connect with others, discuss the latest topics and stay in touch.

Education makes us mightier. Education gives us the ability to follow important discussions, to be well informed and to participate. The louder our voices are as patients, the more we can be heard. This is personal and an ongoing education is something we can do for ourselves as patients.

At the end of the day, education is our secret weapon. Since I started to learn more about MS and get involved online, my quality of life has improved. I feel more informed, more empowered, and also supported by others who share similar experiences as I do. It has all been worth it.

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