Blogging Your Story: Five Things You Should Know

Once an individual with EB, family member or caregiver decides to begin sharing her household’s own EB story, it can be tempting (not to mention, very easy) to simply jot down everything and hit the “publish” button. It’s wonderful to want to tell all and help others going through something similar by sharing details of your own journey. After all, a blog is a great opportunity to prepare them or to try to answer their questions based on what you’ve learned from your experiences, the way you may have wished someone had been there earlier to help you. Whether you use tools like WordPress, Blogger or your own web site, there are some things to consider before launching a blog and certainly before posting everything – not so much a how-to guide but what you should know that others don’t always tell you.

  • Above all else, have a purpose.
    There are many blogs that break this first rule, and you recognize them from the first paragraph or two or by perusing the last three or four entries. Ask yourself why you are doing this blog and what you hope to accomplish. Will it simply serve as a means for venting, or will you use it to offer others a practical tool that can connect them to answers to the many questions they have?
  • Be mindful of accuracy and separate opinion from fact.
    Because ours is such a small community, we rely heavily on others for information. If we were to turn to mommy blogs for general parenting advice, for example, we’d have a plethora of voices to choose from. However, , there is only a small group of voices speaking out regularly in the blogosphere about epidermolysis bullosa, making it that much more crucial that the information shared is thoughtful, accurate, and helpful.
  • Respect others’ privacy with your decision to share all.
    Don’t forget: you made the decision to go public with your story, not everyone around you. As you record important chapters of your story and specific events or processes that are part of your life, not everyone in your world will be on board with being a part of public record for all to see. Remember that and be respectful of others who do not want to be featured in photos or discussed/named in your blog.
  • Commit to a blog schedule that’s feasible for you in the long run.
    You will be enthusiastic at first to blog all of the time but will soon realize that it’s also tiring work, particularly if you begin to discuss some personally challenging or emotionally-draining issues or events. Set yourself a schedule and stick to it. Many people underestimate the time and emotional investment a blog requires. If your blog is part of your daily or weekly routine, it will be easier for you to maintain.
  • Have realistic expectations about feedback.
    So many of us who create blogs, regardless of topic, write our first few entries, promote them to the world through Twitter, Facebook, MySpace and other means, and then sit back and wait for this mad rush of comments and feedback, and unfortunately it doesn’t work like that. You will learn two things right away: the topics you write about for which you anticipate the most response often yields none and a topic you never expected would capture anyone’s attention can sometimes be the most popular conversation you’ve ever launched. The lesson here: your mission shouldn’t be to write about what you think others want to read but write what you feel and what you have to say, and let the conversation grow organically.

Okay, one more for good measure… because #6 might actually be one of the hardest lessons to learn, so it’s an important reminder.

  • Remember: not everyone will like your blog or support your mission.
    It sounds ludicrous: why would anyone NOT like a person with a disease trying to answer others’ questions or a parent reaching out to others for hope or support? You would be surprised. There will be people who may doubt your sincerity or question your motives. Sometimes people who may dislike an organization you support may use this as a means to criticize or speculate or if they disagree with a certain care approach or philosophy. They may want to publicly point out these differences. As with everything else you face on a daily basis, simply be strong and continue doing what you know is right.

So congratulations on making that decision to speak up and tell your story. For some great points of reference to check out on your journey and see how others have used this unique communication tool, here are just a handful of blogs you may want to review: Bella’s Blessings, “EB”ing a Mommy Blog, Team Joella Blog, Before the Morning Blog, Loving Baby Daylon Blog, and In Garrett’s Memory Blog.

You’re on a great path with a meaningful mission. Good luck, and when you do launch your blog, please send us details so we can spread the word to the rest of the community!


Bella’s Blessings Blog

“EB”ing a Mommy Blog

Team Joella Blog

Before the Morning Blog

Loving Baby Daylon Blog

In Garrett’s Memory Blog

Related Posts:

A Q&A with EB Friends Creator Chris Pez Matthai, Part I

Resolve to Speak Up for EB Families

A Story We Must Share

1 comment

  1. Melissa Curtis says:

    i have a blog for my little boy, Liam…is is It is slow moving but I try to update as much as I can… This was a nice article!