The power of patient advocates and why your voice matters

Hey there. I see you. Do you battle chronic illness in silence…and maybe even with a bit of shame? I feel your pain. I kept quiet about my fight with Crohn’s disease for 9.5 years. It wasn’t easy, but I just didn’t feel ready to share my story and be labeled as “Natalie… the girl with Crohn’s disease.” I know it’s overwhelming, I know what a burden it is to be in a crowd and have a secret that no one knows about. I was that person fighting an invisible illness and only sharing with those close to me from age 21-30.

TV interview on KSDK about Crohns

Nobody wants pity or sympathy or to be thought of as different. But, let me tell you what it feels like when you finally make it known that a disease is part of your being. It’s freeing. It’s cathartic. It’s empowering and it’s powerful. Your experience as a patient and as a person is like no one else’s. You have the ability to inspire others by sharing your struggles and your triumphs. Just because you battle chronic illness doesn’t mean you can’t accomplish all you want to. The only person holding you back…is you.

By sharing your story you open yourself up to a network of online strangers on social media who quickly become friends and your most trusted cheerleaders. We lift each other up. WALK4Because even though we may be hundreds or even thousands of miles away, we can fathom what it’s like to battle a flare and face the unknown every hour of our lives. It takes some courage to spread the word and be an advocate, but once you do, you’ll wonder why you ever held it all back.

When it comes to motherhood, please know that you are not alone in your worries and concerns. There is a whole mama tribe online and in your community that gets what it’s like to have chronic illness as a parent. I find it so beneficial to reach out and talk to fellow moms and prospective moms on social media. It’s amazing how quickly you connect and how easy it is to relate to one another. meandreidHaving a chronic illness like Crohn’s and having a baby pretty much makes you a bad ass (no pun intended). 😉 You got this! And when you look at that amazing miracle YOU created each day, you’ll feel an inner strength to push through the hard days that much more.

During my pregnancy and in the three months since delivering my son, I’ve quickly come to realize the power of patient expertise. If you’re reading this wondering if you should share your story, the answer is YES!!! Please do, because everyone…including myself, can benefit from your experiences, viewpoints and perspective.

I have some exciting projects, speeches, podcasts, and articles in the works that I can’t wait to share with you guys. This month marks my 12th anniversary with the disease…I’m amazed at where the journey has taken me thus far, and I look forward to candidly sharing it all with you.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s