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.

Stress Management for Caregivers

*The following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of your personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.


For many of us in households where managing EB is part of our daily routine, serving as a caregiver or support resource is just an expected role we take on. As we become more and more involved in our caregiving responsibilities, it can be quite common for those serving in these roles to neglect their own health and wellness needs or ignore high stress level indicators.

The American Stress Institute acknowledges that there is no single agreed upon definition of stress. Often its definition can be subjective. However, some of the most commonly accepted descriptions of stress define it as “physical, mental or emotional strain or tension” whereby “demands exceed the personal and social resources the individual is able to mobilize.”

The real key to the last part of that definition is that demands exceed resources. As caregivers, we may have no control over weight of those demands, so it’s essential to build up a foundation of personal and social resources to be prepared for the toll these stresses– in whatever form, duration or size – can take and to avoid caregiver burnout.

Here are some helpful strategies to help build these stress management resources.

  • Commit yourself to sleep. Be insistent that you get a proper night’s sleep. The Harvard Medical School Division of Sleep Medicine reports that there’s a close connection between sleep and mood, and that poor or inadequate sleep can lead to irritability and stress, whereas what was deemed a “healthy sleep” could enhance well-being.
  • Keep moving wherever and however you can. The Mayo Clinic suggests finding even a small window of time most days of the week for some kind of physical exercise – a morning swim, a mid-day walk, an evening bike ride – which can be good for both a healthy body and mind, as well as serve as a natural de-stressor.
  • Eat healthful foods. According to the Mayo Clinic, making sure you include plenty of fruits and vegetables in your diet can help you get the recommended daily allowance of vitamins and minerals for you to maintain the energy necessary to keep up with the typically demanding schedule of a caregiver. The National Institutes of Health also suggests following a low-sodium diet to reduce the risk of high blood pressure and hypertension, which can accompany high-pressure and high-stress roles like caregiving.
  • Stay social. Keep in touch with family and friends and don’t isolate yourself. The Mayo Clinic notes that sometimes it can be helpful to make arrangements to meet up with others outside of the home. Consider teaming up with a walking buddy to combine both exercise and socializing if time is truly limited.
  • Ask for help and accept it graciously. Some of us may have inherited certain beliefs that we must do everything on our own. But when caring for a loved one or good friend with an illness like epidermolysis Bullosa, it’s important to recognize that we may not have all of the resources or tools necessary to go it alone. Reach out to others, suggests the Mayo Clinic – those who can offer advice, outright help, or support in some other form.
  • Find a support resource to tap into regularly. It can be a formal support group or even an informal in-person or online gathering of individuals who may be facing similar challenges as caregivers, though it may not be specifically tied to EB. The Mayo Clinic points out that support groups can be a great place to make new friends. Check with local hospitals and community centers for any formal meet-ups or upcoming workshops that could be beneficial. Opportunities to share and learn from others can provide a much needed stress outlet.


Mayo Clinic, Caregiver Stress: Tips for Taking Care of Yourself

The American Institute of Stress, Definition of Stress

National Institutes of Health, Hypertension

Harvard Medical School, Sleep & Mood

Related Posts:

Free EB Information Resources

The Facts about Depression

Identify and Manage Caregiver Burnout