Why Speak Up and Be Heard?

Happy World Ostomy Day! Today is the day for ostomates and former ostomates to “speak up and be heard.”

I choose to speak up about my ostomy because I do not want anyone to feel alone, and I want to fight some serious stigmas. Ostomates should live with less fear of negative reactions from others, and a good attitude only goes so far. I discuss my surgery and life with a stoma whenever it seems relevant because my voice contributes to the gradual public education we strive toward. I want everyone to know that ostomy surgeries save lives, and ostomates are not disgusting freaks.

I am well aware that some of my healthy peers are uncomfortable around me, and a few of my dear friends abandoned me because of my health issues. Raising awareness comes at a price. My priority is advocating for people who know the loneliness of physical suffering. I am willing to alienate the people who have a problem with my health-related conversations on Facebook, on my blog, and throughout my everyday life because those relationships are not worth having. That may sound harsh, but when I realize someone cannot accept me for who I am, I need to let them go and move on. When I hear similar stories of rejection from my friends in the online ostomy and IBD communities, I feel deeply sad and I want to hug my hurt gutsy buddies. Then I move on and do something about it.

I spend each day of my life feeling inadequate, even with this blog. But you know what? I feel fantastic when I speak up about my experiences and share resources, because I know God has called me to do this, and I am using my skills to the best of my ability. I may be restless and embarrassed about taking a very long break from my academic career, but there are brighter hours and days. Many of you know how that goes. If you’re not where you want to be, even if you don’t have much energy, there will be windows of time you can use to support others facing similar situations or fight whatever stigmas make you cranky. One key to being a good advocate that I have not quite mastered: don’t beat yourself up when you just need to tune out and rest.

Whether you’re comfortable sharing information about your health or not, I support your choice. If you’d prefer to stay quiet, only discuss your ostomy or disease privately within support groups, or you can’t stop talking about your crazy guts, here’s a story for you so you know where I’m coming from. My situation was quirky, because I have spent a lot of time looking sick, fainting, and walking around with IV bruises and heart monitors. I went public with my ostomy at college, and a ton of people asked me about my health in the months after surgery. A horrible Crohn’s flare forced me to leave school early in 2010 and chill in the hospital for a bit. I was horribly malnourished and very skeletal-looking. I had my surgery in July that year and gained twenty-some pounds in the four weeks afterward. I inflated everywhere in the best way possible. When I went back to school, I was still adapting to my new gizmo and had only talked to close family and friends about it. Then I went back to school looking very different, eating and drinking whatever I wanted, and spending time outside my dorm room. People had questions! It got a little awkward at some moments, and there was a lot of shock from my peers who had never heard of ostomies, but it was always followed by positive comments and thankfulness that I was less dead. Sometimes eavesdroppers joined in, so I really had to get comfortable and creative with conversations quickly. I don’t think anyone would have minded if I had told them I was uncomfortable discussing my surgery, but I would feel weird doing that with friends and acquaintances who were genuinely interested in hearing about my transformation.

Spring 2010


Fall 2010

At that point, I just answered questions as they came. Eventually I quit worrying so much about what my Facebook friends thought and started getting more involved some special online communities. That’s a story for another day.


4 comments on “Why Speak Up and Be Heard?

  1. I feel the same way about feeling inadequate most days! I really want to be involved and be an advocate but dont know how of what i should do! I did some YouTube vídeos but i felt like everything about ibd and ostomies had already been discussed so i feel kind of stuck….if you have any ideas i would really appreciate it!

    • I understand your feeling that everything has been discussed, but we all have different perspectives and communication styles, so don’t worry about dealing with similar topics! Whether you’d like to make YouTube videos or perhaps write a blog, there are a few things I personally love to hear about. I like to hear how people handle everyday life and what makes things easier: relationships (family, friends, romantic), travel, school/career, nutrition, exercise, etc. We’re all dealing with different circumstances, so check out some of the bloggers on my Links page. See what topics draw your attention, and write about those. That’s how I got started: by thinking about what interests me. I’m always open for brainstorming!

      • Thats a good idea…thinking about what interest me and my personal perspective on everyday living with an ostomy. Ive tried to start a blog but i can never find a good one…any suggestions there?

  2. […] already said a bit regarding my reasons for writing about my health (Why Speak Up), so today I will say more about why I choose to reach people with writing specifically. I’m […]

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