Q: Why did you decide to lead a support group?
A: I felt that I wanted to become more involved in finding a cure, making people aware of the disease and reaching out to others who are struggling with the challenges that come with this disease. I have had the opportunity to be a leader in other roles and feel that it is important to share my skills and take on this responsibility while I have the ability to do so.
Q: When and where does your group meet?
A: We meet every other month on Saturday mornings at a Panera in Decatur. We are planning on holding informational meetings each quarter on Saturday mornings so that we are able to include spouses and invite guest speakers as well. We are also having a ‘mini-conference’ on Saturday, June 3, 2017. More information on the group meetings and the mini-conference can be found here.
Q: What do you love most about being involved with this group?
A: The thing that is of greatest benefit is the friendships that I developed with others who understand chronic illness and how it can impact our lives. We learn from each other and most topics are on the table for discussion. It’s nice to laugh with others, share our concerns and help each other find resources that can be of great benefit as well.
Q: How do you hope to inspire others?
A: I hope that others will see that we can all have an impact which is positive in our lives no matter how ill we are. By sharing our stories and challenges we can each continue on in our lives with hope. I think too that my desire to inspire others comes from the “teacher” in me. I have always been drawn to helping people, specifically children and I hope that by bringing a smile, encouragement and hope to those in our group we each have a brighter day.
Q: Can you share any interesting facts about yourself?
A: I feel as though I have had such a blessed life. I have a close family and friends who are supportive. I have had wonderful opportunities to work with special needs students and to care for many children within my home. I have had fun hobbies, from being a hot air balloon pilot to currently running a vintage 103-year-old barn that hosts weddings and special events.
Q: Any words of advice for patients?
A: For those who are faced with challenges with this disease, give yourself permission to go through all the stages of grief related to the change in the life you expected to have, but don’t lose hope of the bright and fulfilling life you still can have. Don’t be afraid to voice your fears or anxiety about this disease. Often, we feel as though we need to be strong for others in our family, but we need to make sure that we are getting the emotional and psychological support for ourselves so that we are able to enjoy the life that has now been dealt to us.
Q: Any words of advice for caregivers?
A: Don’t be afraid to say that you can’t handle this role. Not everyone is meant to be a caregiver and being the individual who helps to find the right caregiver can save your relationship with your spouse, child or relative. This disease has been dealt to you as well and changed your future too. Take the steps needed to care for yourself both physically and mentally. Educate yourself about the disease and don’t be afraid to ask the person with scleroderma how they truly feel, be persistent and listen. They need your love and understanding more than anything else on the good and the bad days.
Q: Why should someone get involved in a support group?
A: Getting involved in a support group whether on line or in person is so important for your mental well-being. Even if you aren’t ready to share yet, take the time to listen to others and giving them encouragement can assist them in healing as well as yourself. Support groups provide you with the opportunities to grow and learn about the disease and the new treatments that might be headed our way. It can be empowering for yourself or you might even find that you are inspiring to others. Let your story be heard.