You may know me as Sarah from Ostomysecrets^®, or for my role as a me+ Ambassador. I been shouting from the rooftops about Ostomy Awareness and acceptance for the past 15 years.

Then why, I find myself wondering, did I need last weekend’s Girls with Guts retreat so much? Why did I find myself overwhelmed with love, joy and gratitude in the days after returning home? I’m a well-adjusted woman with an ostomy and have been all these years. What was it? What was I feeling?

As I take a step back to reflect on it, I truly understand the message that I have been spreading: the message of SUPPORT.

An anecdote I like to share with people is, that if a person with a visible disability sees another person with that same disability out in the community, there is a visual acknowledgement and understanding. It is unspoken and immediate, “I’m not the only one, that person gets it”.

On the flip-side, I will ask people if they have ever seen another person with an ostomy. The answer is always no. Numbers do not lie; there are a lot of us. We are everywhere, and you most likely interact with people with an ostomy on a daily basis.

These two examples lead to my point. When you have an invisible disability, or chronic medical condition, it’s our secret to share. Because bathroom habits tend to be taboo or stigmatized, many ostomates do not feel comfortable sharing their story, so they are left feeling alone, isolated and lacking needed support.

"When you are looking in the mirror at a body that has been radically changed due to medications, surgeries and illness, the idea of self-love is radical."

From the moment I drove up the dirt road to Camp Shady Brook in Deckers, Co for The Girls with Guts 2019 Retreat, that support was there. We were all women who are fighting the same fight. We are bonded under The Girls with Guts Mission: “to support and empower women with Inflammatory Bowel Disease (IBD) and Ostomies through the building of sisterhood and self-esteem”

As the weekend went on, that message was reiterated time and time again: self-love & self-acceptance with a focus on intimacy and sexual health. When you are looking in the mirror at a body that has been radically changed due to medications, surgeries and illness, the idea of self-love is radical.

Being surrounded by women from all walks of life, all ages, orientations and stages in their battle was so comforting. I felt safe, empowered and loved. The conversations that you can have when you are experiencing that, are deep and powerful. Those connections will keep me centered and able to provide that to our Ostomysecrets^® customers in my daily role.

So, how can you find nuggets of love and support in your life?

First, our me+ Website is full of inspiring stories of other ostomates in me+ Community, take the time to read some stories that may be similar to your own. Please know you are not alone in your fight, and there are so many people who do truly understand what you are facing today.

Second, check out a local support group meeting. Meeting other people face-to-face is life changing. Seeing someone surviving and thriving with their ostomy is a wonderful motivator. Reaching out to others who may just be beginning their journey has a way of helping us along our own. It’s a way to pay it forward, so to speak. The nurses and volunteers are always happy to welcome new faces, whether you go just a few times, or become an active member. The UOAA has a great tool to find a group close to you: https://www.ostomy.org/support-group-finder/

Girls with Guts is a wonderful organization for women, and have created some wonderful online and local community meetups and programs, you can visit their website to learn more: https://www.girlswithguts.org/

There are many ways we can all find love and support. Our family, friends and caretakers can be there for us; it’s so nice to feel that. However, I encourage you to seek out the support of shared experience. Those who truly get it, because they have fought a similar battle. That was what made the weekend so powerful for me. I did not realize I needed it, but I did. And I bet you would benefit from that kind of support and understanding too!

"Our family, friends and caretakers can be there for us; it’s so nice to feel that. However, I encourage you to seek out the support of shared experience. Those who truly get it, because they have fought a similar battle."

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