Patients Have Power, Don’t Be Afraid to Use It

How many times have you sat in a doctor appointment and felt at a loss for words. Then, the moment you’re walking to the car everything you wanted to say starts flowing through your mind. How often do people in your life question your disease and make comments that make you feel less than? How many days, weeks or months have you kept yourself isolated and fought the good fight in silence. How disappointing is it when you think you finally have your inflammatory bowel disease under control and you find yourself doubled over in pain, racing back to the hospital.

Chances are, along your patient journey you’ve experienced all the above. I know I have. There comes a time in this journey with twists and turns and expected road blocks that you need to pause and realize that:

…As a patient, and more importantly a person, you have power…

You have the power to speak up and be heard. You have the power to question the medications you are told to take and to question that elective procedure that seems risky. You the power to educate those around you and spread awareness about a disease that many people still to this day don’t know much about. You have the power to be an advocate and connect with complete strangers on social media who understand what you are going through on a daily basis. Those strangers may seem closer to you than people you call your best friends.

You have the power to empower.

It took me nearly a decade to realize this. Hindsight is 20-20, but I’d like to inspire others not to wait like I did. It was difficult to take on Crohn’s by myself in my 20’s. By keeping quiet and not talking about my struggles, I think I was trying to make myself think what I was going through wasn’t that big of a deal. It didn’t have to be my reality if I chose to keep it all within those four bathroom walls or on the couch in my family room.

The fact of the matter is, once you receive the IBD diagnosis and until there is a cure, this IS the reality for you and me until our dying day. It’s a rough hand of cards to be dealt. So much feels out of our control.

Crohn’s doesn’t have to be your identity, it is a part of you, but you have the choice not to make it all of you.

So, what do you have to lose? If you question your care, if you speak up to a friend, if you educate a stranger? The answer is nothing. You must advocate for yourself, first and foremost. Once you do that, you have the ability to advocate for others. It’s easier said than done, but once you make that choice, you’ll see how different your patient journey becomes. Think of all you gain, once you realize that rather than being powerless in your fight, you’re powerful.

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