Coping with Change

*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 a medical care or mental health care provider, nor should they be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

The revelation of a diagnosis of EB can feel earth-shattering to new parents. It may raise so many questions and uncertainties or stir up fear, frustration and confusion. For many of us when we become parents, we have a particular picture set in our minds of what raising a family will look like, and as soon as we hear the words, “your child has EB,” we’re not sure what that picture looks like anymore.

Coping with a serious medical diagnosis and the changes it may bring to a couple or family’s relationship and lifestyle can be difficult, so it’s important to work together to get through what can be a stressful and uncertain time. We’ve gathered a few tips and strategies to help support your efforts to overcome the shock and move forward to cope with these changes.

  • Acknowledge your feelings.

At the moment a diagnosis is made, it’s natural to have a strong psychological reaction. As psychiatrist Dr. Thomas C. Lian points out, people can expect to experience feelings of shock, distress, confusion, anger or anxiety. A grieving process is beginning, and it’s important to work through this process and its many stages which may include denial, guilt, anger, self-pity and anxiety.

  • Build a support network.
    Recently, we blogged about the difference between support networks and support groups, and the benefits of both. It’s important to establish a solid system of support to surround you – whether it’s for logistical assistance (such as with transportation issues that may now arise, caregiving needs or new household challenges this presents) or for moral support. Reach out to friends, religious advisors, other family members or fellow parents, as well as any necessary medical professionals who can be part of this important team.
  • Reframe your situation.
    You may view your situation with sadness, frustration and a sense of defeat, but in the long run, how you frame your world around you can have a significant impact on you, your significant other and especially the loved one who has been diagnosed. Writer and personal coach Kay Cross notes the importance of practicing positive talk, eliminating negative thoughts and staying hopeful throughout periods of change or transition. By being proactive and moving ahead while maintaining a sense of hope, we can gain new personal insights. Just as we must acknowledge our feelings to begin healing, we must build a positive, supportive environment to not only help our loved one deal with this disease but to help ourselves grow stronger, too.


Tips on How to Cope with a Serious Diagnosis (

Coping with Change (IDEA Health & Fitness Association)

Related Posts:

Support Networks vs. Support Groups

Becoming a Proactive Caregiver

Stress Management for Caregivers

Comments are closed.