It can be difficult to stay positive as a caregiver or head of a family coping with the diagnosis of a rare medical condition like EB. There are many unknowns, variables that cannot be fully understood and a timeline that may not be able to offer you a lot of concrete answers or comfort due to its unpredictability. Sometimes the key to moving forward and staying positive is making a conscious effort to do so by looking ahead and focusing on positive things that lay ahead in the future and what you know rather than dwelling on what you don’t
Joe Wilner writes in his piece on PsychCentral® “How to Stay Hopeful and Resilient through Adversity” that it is important to focus on the good occurring in your life during these tough times and being grateful and appreciative for what you’ve received from any experience. When others reach out to us and show their support during a call of distress we may have sent out to others, we have an opportunity to embrace our gratitude and focus on their response rather than what may have led us to ask for help in the first place. Wilner also points out that living with purpose and intention can also continue to guide us to persevere even when things may look to be heading in a direction that is either bleak or uncertain.
In another article “Stay Positive in the Midst of Adversity,” writer Mike Robbins notes that sometimes it is the unpredictability of the future that can deliver a ‘doom and gloom’ mentality that can bring us down further. He maintains that by doing three things – being honest, being conscious and being grateful, we can rise above what we’re facing, that which we understand and that which we may not.
So when you look ahead, what do you see that you can be sure of? Perhaps there is an upcoming school event or extracurricular function for work that your family can attend or maybe you're planning a special fundraiser or awareness event during EB Awareness week in late October or sometime earlier that month. Focus your energy and positive feelings on what you know and, in this last example, on all that your event can potentially do to help out families like yours in the future. You may also have some special holiday traditions around Halloween, Thanksgiving or Christmas. Get the entire family charged up and looking forward to those fun activities just around the corner and channel any negative energy from doubt or fear into positive thoughts about your future plans. By getting the whole family on board and committed to focusing on what’s positive, you can provide daily care processes without letting them and an uncertain prognosis dominate your life or thoughts and you can concentrate on enjoying life as a family.
** Please note that the suggestions offered above are for informational purposes only and are not the opinion of EB Resource. Individuals should always consult their physician regarding any skin or wound care program or other care regimens.