IFFGD talks to G-PACT President, Carissa Haston, about the origin of the organization and what "Teaming Up," the theme for Gastroparesis Awareness Month 2018, means to her.
Managing the day-to-day with a chronic gastrointestinal (GI) motility disorder like gastropareis, chronic intestinal pseudo-obstruction (CIPO), or colonic inertia takes more than just the treatments you're prescribed — it takes a community of support. It takes a network of people who have similar experiences to yours and who can share tips on coping, help demystify the tests and treatments that may be part of your medical care, or just offer an understanding ear when it all gets to be too much.
That's what the Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT) does. Run entirely by volunteers who have been touched in some way by a GI motility disorder, G-PACT offers assistance and support in a variety of forms. From online support communities to cookbooks to donated medical supplies, G-PACT aims to help those affected and their loved ones connect with others and work together to get their everyday needs met.
Here, IFFGD talks with G-PACT President, Carissa Haston, about the early days of the organization and the importance of people and organizations "Teaming Up," the theme for Gastroparesis Awareness Month 2018.
You founded G-PACT in 2001 with the mission of increasing awareness for gastroparesis, CIPO, and colonic inertia and working towards better treatments and, ultimately, a cure for those affected. How did your personal experiences with these conditions shape the creation of the organization and its mission?
"Initially, I started out with a focus only on gastroparesis because that's all I had been diagnosed with at the time. In the 90s there were limited resources for gastroparesis — just the medical information I received from physicians. I had met one person with gastroparesis in 1996 from Illinois. That was a perspective-changing moment. It wasn't until the late 90s when the Internet started to grow that I started to find others. It was great to not feel so alone.
"After I graduated from college in 2000, I was planning to go to graduate school for Art Therapy. Unfortunately, my health interfered with those plans. I was able to use the computer skills I gained through college as a graphic design/illustration major to set up a personal website. It included a lot of information about gastroparesis. I received so many contacts through my website that I was not able to respond to all of them. That's when I decided we needed a support group so that everyone could interact with each other. Out of the support group, our members realized the need for a non-profit dedicated to gastroparesis.
"As patients, we knew what special needs we had, and we were able to develop G-PACT from that perspective. All of our programs meet needs we always had and had recognized the need for some kind of resource to meet. For example, our restaurant accessibility cards were created because restaurants would force us to order a full meal, even if we only ate a few bites. Although not legally required to accept them, they have been helpful in many cases with restaurants and allow us to order smaller portions or customize meals. We frequently add new resources based on patient suggestions. Eventually, we added CIPO and colonic inertia as a result of my own experience, but also because patients asked us to include those."
The growth of G-PACT from an online Yahoo! group to a registered 501(c)(3) organization with hundreds of members all took place within a span of less than a year. Can you describe this experience and how you have kept up with the rapid growth of the organization?
"I was blown away. When I started the group, I expected, at most, 75 to join. We had that many after just a couple of weeks! Within a year there were over 800 and 75 to 100 posts or more per day going around. It was hard to manage all of that. A few months later, I added several moderators to help run the group because I couldn't keep up!
"Within four months of starting the group, we began to discuss the need for a non-profit. I had no idea what I was doing! I had no business background. In fact, when "bylaws" and "articles of incorporation" were brought up by our pro bono attorney, I almost quit! Thankfully, there were others who were driven to work through all of that. I was always more of the creative ideas person. I had experience and knowledge from the patient perspective, as well as through hundreds of patient interactions, to know what was needed beyond what the medical community could provide. My creative mind took off on how many unique ways we could meet so many needs.
"We have always been on a mission to do what we can to help find better treatment options or a cure, but we also knew that a cure was a long way off. Patients needed resources immediately to help them get through the challenges until a cure could be found. We are still fighting for a cure 17 years later, but in the meantime, thousands of patients have connected with each other through us and have become part of a crucial support network, as well as receiving free resources geared specifically toward providing unique options to help manage the challenges that accompany these conditions."
G-PACT is run by committed volunteers from across the nation who have been touched in some way by these conditions. Can you share a little about the experience of working with so many others who have been personally affected?
"It's humbling and inspiring. I know how difficult it is every day to wake up and keep up with G-PACT projects. G-PACT is my baby. I have a special passion for that reason. I want it to do well because it has become part of who I am. However, there is nothing more humbling than seeing the same level of passion develop in others who are very ill yet fight to keep G-PACT running and make it what it is.
"It can also be challenging sometimes because we all get sick unexpectedly and projects fall back on others, or we are not able to do everything we would like. However, we are a team, and we all understand the ups and downs that come with this. There is always someone who is willing to take on a project as needed when another volunteer can't finish it.
"I have been out for years at times as I waited and recovered from a transplant, and then years later I developed some neurological problems and eventually lost my eyesight for two years. I came back to a thriving organization because of others who jumped in and took over my various responsibilities.
"It amazes me that others care about something so much that they are willing to dedicated so much of their lives to keeping something I have personally cared about for so long up and running, especially when there are no extrinsic rewards or financial gain. It inspires me to keep doing it when I am exhausted and don't know how much I have left in me. I believe that the only reason they are so dedicated is because we have, in some way, made a big impact on them and they want to give back.
"I often cry when I see how many patients work to raise funds for us to keep operating and develop more programs and fund research, form very close personal bonds, and have the opportunity to meet in person. Some travel hours to connect with others. It's life-changing for them. It's a powerful drive for me to know that we are available as a resource to meet the biggest need I had the first few years after I had been diagnosed — the ability to connect with others who truly understand."
What are some of the most valuable things you have learned through the experience of leading a patient-driven organization like G-PACT?
"Passion goes a long way! Compassion is crucial. We are in touch with thousands from all walks of life, all backgrounds, various countries, in various stages of illnesses, and in various phases in the coping process. The limited psychology I had in college and in my Child Life internship has helped me work through how to approach certain situations in the most compassionate way possible. Since there are so many patients who reach out to us, we can have some pretty tough situations to manage, especially with those that feel hopeless. I often don't even know what to say. People are so desperate for a cure and all I can say is "we are working on it... I know... we want exactly what you want" and just try to help them through the moment.
"I've had to become more relational than I ever imagined. I've had to learn how to view things from a lot of perspectives. I've had to develop patience and compassion. It can be easy to think "just suck it up" sometimes, not because I never feel the same way as they do, but because it's almost what you have to do! There are not many options, and it's so easy to want to give up, especially when you've tried everything. But, I always try to take myself back to the first few years after I had been diagnosed and the horror I felt over my first PICC line, J-tube, or other new procedure and realize this is the first time for so many and it is very scary. I am just thankful the G-PACT team is available to help, and that our patients are so connected they are able to have a lot of those anxieties eased by others who have been through the same experiences. It does take a lot of pressure off G-PACT as a whole when there are patients who are knowledgeable and willing to share their personal experiences. We hear so many stories we can share. We can connect people together when we know of others in similar situations. But, we all have different experiences, so I love to know that so many can share various experiences from a firsthand perspective. It has helped me view myself differently. So many people have so many challenges — way beyond what I can comprehend.
"People often say, "You are amazing to have gone through so much and still do what you do." I don't see it that way. We all have struggles. I personally see the stories of others and am amazed they are doing what they do! I have become a much more giving and selfless person because I see so many needs and so many hurting people. Working with this population has helped me take my focus off myself and my challenges and put that fight for my own life into a fight for the needs of everyone. Being able to hear from so many and see so many needs has helped me get the focus off myself and that has been more healing than anything a physician could ever do."
G-PACT's theme for Gastroparesis Awareness Month 2018 was "Teaming Up." What does that mean to you?
"I have always believed that we are more powerful when we work together toward a common goal. There may be differences in how we work to accomplish those goals, but that doesn't mean we can't work together in many ways to reach those goals. We all have different strengths and perspectives, but that is what teamwork is all about. If people or organizations have a common goal, yet they try to compete to reach that goal, it only slows the process down and makes everyone weaker. Each member of a team has something unique and powerful to offer. Every individual player has a role. No role is unimportant or too small. As organizations, patients, friends, and family, we can all be stronger as we strive towards our goals if we utilize our strengths and support other team members rather than try to overpower them.
"I firmly believe that working together is the most efficient way to reach the end goal. I have so many quotes on teamwork that I love! We have been posting one a day all month. It's hard to choose a favorite, but one that I believe best sums up the theme for the month is:
'Cooperation is the thorough conviction that nobody can get there unless everybody gets there.'
- Virginia Burden"
Learn more about G-PACT.