Before You Start Blogging About IBD

Are You Ready To Put Your Story Out? Here's What You Should Do First

Many people write blogs or web sites about their struggles with their health and the reasons for doing so are as varied as the blogs themselves. Starting a blog, a web site, or a YouTube channel is deceptively easy, and usually doesn't require any money or special training other than being able to type. Writing down feelings and thoughts about inflammatory bowel disease (IBD) or other conditions can be healing, and has become a common thread that knits patient communities together. 

However, a blog about IBD carries with it a certain measure of responsibility. IBD is a disease that many people don't want to talk about or even think about. There are a variety of reasons for this, including the more embarrassing symptoms of IBD and the many decades of misconceptions that are heaped upon the people who have these conditions. Yet the way to get accurate information out into the public consciousness is to keep writing about it and to share personal experiences about IBD. However, starting a blog about a medical topic—even when you have the disease—is a serious endeavor, and should be given a lot of thought. Here are some points to think about before you start your IBD blog.


Why Do You Want To Blog?

Before you start writing, you need to do some soul-searching to decide why you're starting this blog and where you hope to take it. Image © Pamela Moore / E+ / Getty Images

Blogging is the term we've come to use, but perhaps "journaling" might be a better term for some people. Others might decide video is the best medium for them, so "vlog" might be the better way to proceed. A blog could be shared far and wide, only to a few people, or to no one at all. Every blogger must decide why it is important to blog. What is the point or the goal for the project? Where will it be a year from now, or 5 years from now? Is it more for your own benefit, or are you interested in advocacy?


Are you Giving Information or Personal Experience?

Puzzle Pieces
A jumble of puzzle pieces is your experience with IBD. When you put it together to make a cohesive picture, that is your knowledge. Image © Andy Roberts / Caiaimage / Getty Images

Even today there is a significant amount of misinformation about IBD that gets reproduced and shared over the Internet or even in person. There is more information available about IBD in general, but the myths, stereotypes, and misconceptions persist. Sharing one's personal experience and feelings about living with IBD or caring for someone with IBD is helpful to others dealing with their own diagnosis and struggles. Sharing information to set the record straight about various aspects of IBD is also important, but it will require more education and a commitment to putting out correct information. 


Know Your Own Diagnosis

Doctor And Patient
Take the time to learn more about what's going on in your own body -- you're the one who knows it best. Image © JGI/Tom Grill / Blend Images / Getty Images

Does this seem a strange thing to say? It's not, actually. IBD is a complex disorder, and some patients may not have all the relevant information about their own diagnosis. For instance, what type of IBD was diagnosed—Crohn's disease, ulcerative colitis, or indeterminate colitis. IBD is not always easy to diagnose, which is why it's easy to get it confused, and also why some people (the estimate is anywhere from 10% to 15%) are diagnosed with indeterminate colitis. The best source of information about this is your physician, and preferably your gastroenterologist. You'll need to be crystal clear on what's going on in your own body in order to write about it intelligently. 


Understand Your Treatments

Your medicine cabinet at home may feel like a pharmacy with you as the pharmacist, but it is really important that you understand what you're taking, and why. Image © Peopleimages / E+ / Getty Images

People with IBD have a variety of treatments available to them, including various medications and surgeries. Diet plays a role in certain circumstances, and for some, it becomes a part of IBD management. Before describing treatments, be sure to understand which you are receiving and why you are receiving them.

Surgeries can be complicated and many of them seem similar to the non-professional. Even further, the course of surgery could change based on what a surgeon finds once they start the procedure. Again, the best source of information to answer these questions is your gastroenterologist or your surgeon. You may need to dig deep and do your own research on your treatments, too. What's important is to avoid giving the impression that your individual experience with a treatment is what anyone else should expect to have. 


Understand IBD

When you start connecting the dots and doing your own research, you'll make new connections regarding your own disease. Image © Lisa-Blue / E+ / Getty Images

How can you understand IBD when even the best medical minds in the world are still stumped on so many particulars of IBD? That's just it—you need to be honest with yourself and your readers on what you do and what you don't understand. You need to be able to do research for yourself, reading research reports or reviews and understanding what they mean. When a topic is still controversial or there are misunderstandings surrounding it, it's important to point that out.

Giving medical advice or promoting treatments that don't have any evidence to support their use could lead to problems with your blog. The IBD community is very warm and welcoming, but inaccurate information will get you called out.

Your Experience Is Unique

Every person with IBD has a different story to tell. Our disease course is as individual as we are. Own your story, and feel free to tell it: after all--it's yours. But do yourself a huge favor first and decide why you are blogging and what you hope to achieve. After you've decided where you want to go with your writing, take the time and energy to learn more about IBD. Your efforts will pay off dividends for you, and will help you on your journey as a patient.

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Article Sources

  • Guindi M, Riddell RH. "Indeterminate colitis." J Clin Pathol. 2004 Dec; 57(12): 1233–1244. doi:  10.1136/jcp.2003.015214 PMCID: PMC1770507.