In 2004, I was invited to speak at my first ostomy conference. The topic I was to speak about was pregnancy with an ostomy, and I was ridiculously excited to share my story and experiences. My daughter was 18 months at the time, and after being told I’d never have a baby or carry full term because of Crohn’s disease and all the surgeries I’d had, in my mind, the opportunity to share publicly about my miraculous pregnancy was an “in your face!” to the Universe. That week in Louisville, KY speaking and interacting with ostomates from around the country ignited a flame in me, and was a “light bulb” moment for me. THIS. This is what I was supposed to do- use my story and experiences to affect change, to create a better future for those who live with IBD and ostomies.
So that’s what I did. I’d already been involved with a camp for kids with ostomies, diversions and other bowel and bladder dysfunctions, so a natural progression was to get involved with young adults with the same challenges. So I founded YODAA (Young Ostomate and Diversion Alliance of America), and teamed with the national ostomy association to provide programming for young adults at their national conference. From there things snowballed – 2 stand-alone national conferences for young adults, conference planning chair for the national ostomy association, then being elected president elect and president of that organization. That led to strategic planning meetings, more national conferences, nursing symposiums, speaking opportunities, leadership training weekends, international travel, publishing articles, and a public awareness campaign- all of this while I worked a full time job for the Crohn’s and Colitis Foundation of America! From there I was offered a job in industry – an opportunity to work for a company that was making a new and high demand product for the ostomy community. Of course I took it! That led to more teaching engagements, speaking opportunities, WOCN conferences and travel. PHEW! I’m dizzy typing all of that!
I made my mark on the ostomy and IBD communities – all within a 7 year time period! And I loved EVERY MINUTE OF IT. Nothing made me happier than to meet someone new whose life had been impacted by the need for an ostomy, or by IBD. Connecting them to resources and mutual support, and fanning the flames of hope in their hearts was deeply gratifying, and deeply personal. My passion and conviction were put to the test, but I never wavered. I was at the top of my game, and it felt imperative that I never disengaged, disconnected or stopped paying attention to the newest challenges facing the ostomy and IBD communities.
But it was very taxing on my body, mind and spirit. That kind of constant connection is exhausting. I ate, drank, slept and was married to Ostomy and IBD. In 2013, I began to notice I had an aversion to going to work. Where I once LOVED talking to patients on the phone, I now cringed every time I heard that familiar ring. Anxiety set in when I tried to talk to my employer about it, because how could I explain that I, Mrs. Ostomy, needed a break? I tried to talk, encourage and shame myself out of my funk, but nothing was working. Eventually depression, a demon I had battled a time or two before, began to rear its ugly head. I started feeling like everything was hopeless – nothing I did mattered. The years I had volunteered my time and talents felt like they were wasted. I couldn’t see where I’d made an impact. My big picture had been shattered.
And then I got sick. Really sick. As in almost died. Multiple bi-lateral pulmonary embolisms (blood clots in my lungs for the less medically savvy). It took 6 months to recover, only to find out that I needed major abdominal surgery (again – this was # 17), to the tune of multiple hernia repairs, a stoma revision, and a total abdominal wall rebuild with mesh. Considering my work performance had deteriorated, I could hardly blame my job when they cancelled my contract. Fast forward through a difficult operation, month long hospitalization, 3 months of IV antibiotics at home, and another blood clot, I started 2014 with the career and advocacy work I LIVED for heaped at my feet as barely warm ashes. After recovering from surgery (finally), my immune system decided that my over decade long remission was due for an end, and since June of last year I have been dealing with a cutaneous form of Crohn’s disease that manifests itself as pyoderma gangrenosum around my stoma, and in deep, fistualizing ulcers in the skin of my perianal area.
I’ve learned some things through all of this, and I’d like to share them with you, in hopes that once again, my story and experiences can provide some guidance or hope for someone who needs it.
- YOU ARE NO GOOD TO YOUR CAUSE IF YOU ARE NOT GOOD TO YOURSELF. Self care is imperative. You have a right to be well, even when advocating on behalf of those who are sick. It’s ok to leave your own needs in the equation. When you feel fatigue setting in, pamper yourself. Reward yourself for doing good. I like hot bubble baths, lavender scents, martinis and music or a book. You may like a punk rock concert or a garden full of flowers or veggies. The point is to take some time JUST FOR YOU, and connect with yourself. Turn off the phone, silence the email and texts, and forget about the next project. Take this time to be thankful and grateful – remembering why it is you decided to become an activist in the first place.
- GET SOME THERAPY. It is grueling work to deal with a constant barrage of negative forces and news. People you are trying to help will be mean to you. The piece of legislation you worked long hours on may not pass. The advice you gave the new patient may not be taken. Patients will die, colleagues will experience hardship, and it can be devastating. It’s OK to ask for help for yourself. We spend so much time “being the help” for someone else that we forget there are resources out there to help us cope with the emotional fatigue that comes with bearing someone else’s burdens.
- EMBRACE DIVERSITY. Find something else you’re passionate about, and concentrate on that for a while. Probably best if that thing is not health related. I have a love for animals, and we rescued a pit bull a few months back. My passion for that issue is different than my resolve to fight Crohns disease and ostomy stigma, but it gives me an outlet for my ‘do-gooding’ and the rewards are similar.
- KNOW YOUR LIMITS. Finding balance is difficult for “normal” people. For those of us with our own health problems, who are trying to balance career, family, friends, and advocacy, it’s even harder. Set some hard limits for yourself, write them down, and vow to keep them. Say “When my commitment to health activism starts to impact X, Y, or Z, then I need to re-evaluate my priorities.” For example – I missed my daughter’s 6th birthday because I was in Mexico, representing the USA at an international ostomy conference. And for 3 years, I used ALL of my work vacation time for ostomy or IBD events – camp, conferences, speaking events. I justified it by telling myself that the community “needed” me. But the truth is my family needed me just as much, and I needed a true vacation!
It’s been a few years since I’ve done any ostomy or IBD related advocacy or projects, and I’ve had a really good time off, connecting with my spirit, evaluating my mistakes, and recharging for the next chapter. I was down, but I’m not out. Like the Phoenix, I feel like it’s time to rise from the ashes and see what this new life has for me. Time to get back in the game.