July 31, 2015

Finding Your Support System

teen girls groupI truly believe finding a support system of chronic disease “peers” is important to maintaining emotional and physical wellness.  I myself am a patient diagnosed with ulcerative colitis, and have undergone two major surgeries to have my colon removed.  Since surgery 10 years ago I have been in excellent health, and have since become an advocate for those living with chronic disease and feel strongly about finding the right support system.

When I was diagnosed with UC at age 16 I did not know anyone else with the condition.  No one in my family had a form of Inflammatory Bowel Disease (IBD) and I had never heard of this condition.  Learning about the disease explained a lot of my symptoms which had gone on for many years prior, but it did not comfort the “alone” feeling that was lingering.  While feeling “alone,” I also had an extreme anxiety and fear about sharing the “secret” of my health condition with anyone.  I begged my parents not to tell any friends or family and talked about my disease to no one.  I continued to play sports and go to high school, all the while putting a lot of pressure on myself to fit it and not be “different.”  The symptoms of IBD can be quite embarrassing and hard to hide.  The side effects of medications can cause physical changes too.  I was not fooling people, because it was obvious I was sick, but I would continually deny those accusations.

Now 29 years old, I look back and wish I could have shook myself and said- “do not be embarrassed, you did not do this to yourself!”  Being a teenager was hard enough, and I really wish someone pushed me to talk to someone.  There are SO many resources out there, and so many people who want to give support.  We need to make sure to get those connections in place.  There were times when I wanted to give up living because I felt so different and felt like the cycle of IBD flares and medication side effects were not going to end.  Most of the reason for wanting to give up was because I felt alone in this experience.  Of course my parents tried immensely to help me, but not even one doctor offered to put me in touch with a social worker/counselor or organization that offered resources to families and children managing chronic illness.  I would like to think things have improved in the healthcare system since, and especially in a setting created for children and teens.

After regaining my health, my experience drove me into a world of wanting to provide support for those teens struggling to manage a chronic disease.  My personal mission: “no one should ever feel alone.”  Luckily, I have been able to work with some amazing organizations providing support and directly impacting people living with chronic diseases.

I connected with the Crohn’s & Colitis Foundation of America when I was 20 years old.  I was thrilled to find an organization to connect with others going through the IBD experience and immediately signed up to be a counselor for their Camp program, attended their education events, and then eventually started a support group for teen girls managing IBD.  Thereafter finishing my masters program in Mental Health Counseling I was offered a job with the CCFA National Headquarters.  I joined their patient education team and was able to provide education and support to IBD patients all across the U.S.  It was the perfect fit for me and I am so grateful for all I was able to do in working and volunteering with CCFA.

As many of us do, I craved a new challenge and in early 2015 I was introduced to Lyfebulb.  I truly know and believe that our team here will positively impact those affected by chronic disease.  We are a team, we are patients, we are family members of patients, and we are trained in understanding the physical and emotional aspects that come along with having a chronic illness.  While Lyfebulb’s main goal is not to provide counseling and support services to patients, we are working hard to invest in companies that will create quality of life improvements in the near term.  And while we do that, we are also creating a patient community where we hope to hear your voices, share experiences, and together support one another.