Alicia’s IBD Awareness Week Advice: Trust your journey.

As many of you may know, I’ve been the President of Girls With Guts since January, 2018. Hopping into a leadership position felt natural to me, as I have been with Girls With Guts since 2013, but it comes with its fair share of new challenges. I, specifically, have Crohn’s disease, a j-pouch, and a double recto-vaginal fistula that has caused a ton of distress in the last two years. Navigating a nonprofit leadership position, working as a freelance photographer, and managing my own health has sometimes thrown my stress levels into overdrive – which, as many of you know, is not great for IBD.

The top 5 things I’ve learned during my first year as President are:

Trust your journey.

IBD gave me a voice that I didn’t know I had and kick started my advocacy journey. I’ve always been shy and a “behind the camera” type of person. I went to the Creative and Performing Arts High School in Philadelphia for film and then to Syracuse University for the same thing. I’ve always preferred to be the director or editor, rather than the talent for my projects. During a film class at SU, I chose to “come out” and reveal I had an ostomy bag. I was met with resounding support, and ever since then I’ve never looked back.

When I graduated from college, Girls With Guts was just born. I was asked to film the first retreat in 2013, and shortly after asked to join the Board of Directors as the Director of Multimedia. Being Director of Multimedia for Girls With Guts was essentially my dream gig. I was not only able to work on video projects that felt very personal, but I was also able to advocate and raise awareness through a medium I enjoyed.

If you told me in 2004 that in 2018 I would be the President of a non-profit for women with IBD and ostomies I would have not only laughed at you, but run for the hills. Now, I couldn’t imagine doing anything else and am happy my own twisted and uneven path brought me here.

Progress is rewarding, but it’s nothing without a few setbacks.

There’s a saying that goes, “When everything feels like an uphill struggle, just think of the view from the top.”  I think that quote adequately describes the last year for me. Learning how to perform in a role that I have never filled (and abruptly) was no easy task, but has been so rewarding when I look back and think of everything we have done this last year. We started from the bottom, rebuilt our Board, updated our mission, brought back old programming, revamped existing programming, and even started some new initiatives without skipping a beat.

There are days where I wake up full of gratitude for the good the Board and I are doing. I feel motivated to push myself harder, create more programming and, essentially, expand beyond my own personal bandwidth – which doesn’t usually end well. I’ve learned that time management is my biggest and most recurrent obstacle because progress makes me want to push harder. I’ve had to accept that I just can’t multitask my way through everything and have started creating priority lists to try to tackle them in a reasonable timeframe, while also taking adequate time for myself to decompress.

Not everyone will agree with the decisions you make.

I am a sensitive person. Being a sensitive person in a role like this is difficult because it’s easy to assume that if someone disagrees with you it’s because they MUST hate you. This is obviously a very irrational and tiny voice inside the head of someone with anxiety, but it is very much there and at the worst of times.

Being a leader means making decisions that not everyone agrees with, but are ultimately better for the organization which means you have to adapt, grow a thick skin, and learn to trust yourself. We made a LOT of changes this year and with some of those changes came pushback. I try to remember that we are a Board of five volunteers and who try very hard to dedicate what we can to GWG, but our time is not infinite. It is okay if people disagree with you, because on the flip side, there will be a long line of people who have your back and support your efforts. You can’t make everyone happy, but you can try your best to.

Asking for help is okay.

I’ve spent the last two years going failing biologic after biologic, having seton drains placed and removed, shopping around for new surgeons who could offer me different opinions, and ultimately being faced with the hard reality that I am nearing the end of my IBD treatment options. I was also diagnosed with hypertension and have had frequent, recurrent migraines, both most likely brought on by stress.

Sometimes I neglect to take time for myself, especially when I need it most. I have a tendency to forego rationality and try to maintain a “warrior complex” because I am the type of person who likes to get things done ASAP. I was always the girl in group projects who volunteered to take the lead. I am a “type A” perfectionist, to put it lightly.

There are days when I can’t move out of bed, but I attempt to push through pain, depression, and/or anxiety because of that nagging voice in my head: “People are depending on you!” I learned this year that there are times when you just cannot do everything yourself and it’s okay to delegate and ask for help. The GWG Board is made up of four wonderful women, who all have IBD themselves, and our token male, who’s an IBD spouse. I could not have done a majority of the Girls With Guts revamp without the support my Board or the various volunteers that we have.

You will never stop learning.

Our organization is constantly growing and expanding – and fortunately, so is the research about and the treatments for IBD. While society is now starting to talk about these diseases, the facts are usually very generic and do not show the range or severity of IBD. I believe that organizations like Girls With Guts can be the voice for everyone else who does not fit the “mold” of IBD.

Heading up a patient advocacy organization for a fickle disease like IBD has its own quirks. Initiating professional relationships with an explanation that we are an organization based on a disease that destroys your GI tract isn’t always the most comfortable, especially for someone who’s already anxious in social situations. But being exposed to those experiences has helped me to learn more about myself, how to be a better advocate, and ultimately, how to be a better leader.

• About The Author

Born and raised in Philadelphia, PA, Alicia puts a little bit of “brotherly love” into everything she does. She is a graduate of the S.I. Newhouse School of Public Communications at Syracuse University where she studied Television, Radio, & Film. She now works as a freelance editor, producer, videographer, and photographer. Alicia was diagnosed with ulcerative colitis at the age of 14 and when she was re-diagnosed with Crohn’s disease at 22, Girls With Guts was just starting out. Her passion for GWG was instantaneous as she had not had that kind of support before. She has been on the board of Girls With Guts since 2013 starting out as Director of Multimedia and has now served as President since 2017. She’s always had a knack for bringing ideas to life and that is where her passion and Girls With Guts merged. If she’s not helping to further the overall vision of Girls With Guts, you can catch her raising awareness about her personal IBD journey whenever she can.