Blogging to Heal: A Patientís Perspective

I have Crohnís Disease. What that means to me on any given day changes, but overall it means that I will forever be a patient. I have more good days than bad, and I have experienced years of symptom-free remission, but Crohnís is always looming, even when itís just in the background.

Receiving a diagnosis like this certainly changes who you are as a person. If youíre diagnosed relatively early in life, as I was in my early twenties, it means that you grow up fast. Navigating medical bills and medication regimens, managing a relationship with your doctors while also figuring out personal relationships Ė in a way, life gets incredibly complicated quickly.

This is not to say that itís all bad. Iíve become an excellent multi-tasker, adept at reading the fine print, thanks to the often-confusing state of healthcare and health insurance. Iíve become a good communicator, able to relay critical information to my doctors to help them guide me toward the right treatment. And Iíve found that my personal relationships often feel more meaningful because these are the people Ė my husband, my family, my friends – who are here for me through all of this.

But whatís been the most surprising source of information, comfort and even survivorship has been the Internet. Even before I began my blog, which is just four months old, I relied on the Internet for resources far and wide. Crohnís is one of those conditions people donít like to talk about in public, making the anonymous web the perfect forum for frank discussion.

In my early days of diagnosis, I searched online for the most basic information, and sites like WebMD guided me between doctor visits. In later years, the support on HealingWell.org and other sites kept me going through prednisone-induced insomnia and my worries that Iíd never have children or a normal life. And now, after a few false starts over several years when I just didnít feel ready to widely share my story, Iíve created a blog that has helped me take yet another step in healing.

Like most chronic disease sufferers, I felt that no one in my personal life could really understand what I go through, because even though those close to me truly care about me, they just plain arenít going through it themselves. But you canít just walk down the street and find people with Crohnís Disease. The Internet has given me access to others who are reaching out, like me, to find someone else who understands.

Recently, I posted about my first Humira treatment. I told the frank story of what it was like to receive the medication via FedEx and then give myself the four starter doses under a nurseís supervision. I talked about my first-time jitters about the needle and the loud click that comes from the injectable pen, but that everything turned out okay, and I felt brave for giving myself the injections. A few days after posting, a woman whom Iíve never met (and probably wonít) commented on the post. She said that sheís had Crohnís for years, and that itís time for her to go on a new medication. But sheís terrified of needles. Her doctor gave her three options, including Humira, and two weeks to make a decision. She wanted to know what I thought. And I told her. What I said wasnít important. Itís the fact that we were able to connect with each other, like friends, but friends who really understand what the other is going through.

If you have a chronic condition these days, you need a team. Your doctors make sure youíre physically well, and your family and friends are there for emotional support. But a blog ó or membership in an online community ó gives that added support to let you vent, let you work out your feelings, let you share, and most of all let you feel heard. Thereís that tiny glimmer of hope that someone out there understands exactly what youíre going through, and sometimes that understanding is everything.

~~~~

Carly Kuper blogs at mystupidcrohns.wordpress.com and is Director of Communications at sister agencies Digitas Health and Razorfish Health.

*Editor’s Note: There will be an ePatients panel at Digital Pharma East on October 19th at 4:15PM
A Panel of ePatients Discuss Key Issues that Affect their Lives, Relationships and Treatment
  • Patients are not willing consumers: How Do ePatients Want to be communicated with?
  • What Factors are Changing How ePatients Communicate and Disseminate/Receive Information?
  • What does the Future Hold for these Communities?
  • Discuss the increasing online collaboration between physicians and patients and what this means for pharma
  • How the internet is creating an environment where patients can not only share health information but socialize around it and inspire each other with the power of knowledge
Featuring
Gilles Frydman
President & Founder
ACOR (Association of Cancer Online Resources)
Kenneth D. Youner MD,
Kidney Cancer Survivor
Medical Director,
ACTION TO CURE KIDNEY CANCER,
Blogger: Drkenbattleskidneycancer.com
Allison Blass
Patient Blogger and Diabetes Activist
www.lemonadelife.com
Hannah McDonald
Diabetes Blogger & Patient Advocate
www.dorkabetic.com

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