Looking Out for Each Other

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

One aspect of the EB community that has always struck me is the willingness of so many people to support others. When another person is going through the same thing that we are experiencing or have been through in the past, it can be personally gratifying to share our own coping strategies or stress management tips and help someone reduce some of the anxiety we might have once faced.

On PBS's This Emotional Life, they examined how important social connection is to our happiness and found that belonging to a group or a community can give us a sense of identity. Certainly no one chooses to be diagnosed with EB or to be a family learning how to live with the disease daily, but when we have the chance to connect with others who share that distinction and those same challenges, it can provide encouragement and support, and help us to feel part of something larger than ourselves, a community for which we have our own unique role and responsibilities.

What are yours? As part of the EB community, what role do you see yourself playing in other people's lives, either those directly in front of you or within your personal circle, or out there among the rest of this tight-knit but geographically spread out EB community?

With the onset of online support groups, too, we can talk things over and share what we're feeling and experiencing with people clear across the globe who can still serve as a sounding board or even offer their own personal strategies for coping with the stress of living with EB. Sites like www.supportgroups.com and www.dailystrength.org can connect people with similar circumstances, and while I do not endorse these or any particular sites, online support groups are simply another avenue that some people have found helpful for showing support and receiving it from others.

Any community is only as strong as its members so we must do what we can as caregivers, as parents and as patients to make ourselves a priority. That means taking steps to ensure we have a support network in place and finding opportunities to give back as well so we can feel the joy of helping another person whose challenges we identify with and maybe even lighten the burden of their stress and anxiety.