Renee and Erin
Irritable Bowel Syndrome, Lower GI Disorders
June 15, 2011
My name is Reneé. I am married to my wonderful husband Mike of 22 years, and am a mom of a 15-year-old daughter and an 8-year-old son. We live in the Florida panhandle and I work as a CPA in a small firm. My GI problems started about 3 years ago.
I started thinking that maybe I need to do something that will help others to know more about these disorders; maybe I need to reach out to help others going through what I am going through. That feeling that “I just need to do more” kept growing inside and began to grow into a passion. I sat down one night and wrote a long email to Bill Norton at IFFGD explaining who I am and telling him my story. I ended that email by expressing my desire to get more involved in helping others with functional GI disorders. Bill responded with enthusiasm about my desire to get more involved and then on a phone call explained some of what IFFGD does.
The main result was that he invited me to attend IFFGD’s annual Hill Day in Washington, DC. The purpose of the Hill Day visits would be to advance the legislative agenda on behalf of people like myself with functional GI disorders. Bill explained that we would have some planning meetings on one day but the main focus of the trip would be meetings with various legislative aides of key congressional members. Bill made it all sound so exciting yet so simple and not intimidating. He explained to me that he and others from IFFGD would be there to guide me to help make this trip successful. During our phone call I could feel Bill’s passion for this cause and that passion fed mine to want to help and do more. After our phone call, I knew that this would be my first step into the world of advocacy for patients like me.
In the weeks prior to Hill Day, the IFFGD staff was always available to help me with the planning details, updates on the schedules for the two-day trip, and answers to all of the many questions I had. They so easily and warmly welcomed me into the IFFGD family. Although this was certainly an endeavor like no other I had ever taken on in my life, I never felt uncomfortable or afraid about any aspect of this trip.
As soon as I arrived at our hotel, several staff members met me in the lobby to welcome and thank me for being willing to be a part of these advocacy days. At this point, I was a little apprehensive about dinner that evening. I knew that we would be meeting doctors and research scientists who are leaders in the functional GI disorders field, plus eating is something I can’t do on a regular basis. I was reassured that I need not worry; if I was not able to eat, it would not bother anyone and no one would ask me about it. As we arrived at the dinner, each doctor and scientist that I encountered took time to introduce themselves and thank me for coming to help further our cause. They were all so welcoming, kind, and easy to talk with. They were genuinely thankful that I had taken time out of my life to come and help them help their patients. As a result of their kindness, all of my apprehension faded as the evening went on.
The next day was so unbelievably exciting, busy but amazing. I had seven different meetings with congressional staffers that day. Again, we were all made to feel welcome at each meeting and the staffers were genuinely interested in hearing my personal story. It was very obvious that the IFFGD staff had worked unbelievably hard to make these days successful not only in pushing forward our agenda but in making it successful for each of the participants.
Since the Hill Day trip, I have received regular updates from IFFGD on the impact our meetings had. They also encouraged me to follow up with the staffers that I met with and thank them for their time. They made it so simple to do this by providing sample emails to follow. When the need came to send in follow-up letters to the staffers and the Congressmen themselves, again they provided sample letters to use.
I don’t know that I can truly express in words the feelings of satisfaction I have gained from being involved with the IFFGD. Knowing that these small steps that I have taken through IFFGD have begun the process of helping to better the lives of others who are alone and struggling with their GI disorder. I now know that we are not alone in this struggle . . . we have dedicated people and the IFFGD at our side to fight for us and to provide help in any way they can to patients like myself. I am so thankful that I found this organization and so thrilled that I took the steps to become involved with them and to become involved in their advocacy efforts.