Addressing compassion fatigue as a patient advocate

Every hour of every day we live with inflammatory bowel disease. Once you hear the diagnosis, it’s a part of you… every. single. moment. of. your. life. That alone—feels isolating and scary. When you decide to share your personal patient story publicly, you open yourself up to a world of support. Natalie-7As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.

While it’s incredible to be able to connect with those who live your reality, there are times it can feel overwhelming. Personally, as a patient advocate, who’s battled Crohn’s disease for nearly 13 years, I consider myself well-versed on the topic—but, all I know, are my own experiences. IBD presents differently in every person. Part of being a patient advocate is showing support for others living your same reality. The girl in the UK who was recently diagnosed and nervous about heading off to college. The young man in Nebraska going through a bowel resection surgery. The kindergartner receiving her Remicade treatment.

Since my bowel resection surgery in August 2015, I’ve been able to manage my disease with daily medication and a biologic injection. Luckily, I’ve felt well most of the time since then, and haven’t been hospitalized since my surgery. That being said—when friends (many who I’ve never met) and strangers reach out—through email, Instagram, Twitter, Facebook, texting…you name it…round the clock…desperately asking for advice and support…my heart sometimes starts to ache with stress.

I want to be sensitive with how I word this article, because the LAST thing I want is for people to stop reaching out when they need advice or support. Photo by J Elizabeth Photography www.jelizabethphotos.comWhat I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.

The overwhelming nature of compassion fatigue

When people ask me about my diagnosis, my bowel obstructions, my surgery… it draws a great deal of emotional energy, and at times, can open up proverbial wounds. I’m happy to share my patient journey with transparency and honesty. But, day after day, year after year, these conversations can be a burden. A burden because I truly worry and care about each person I talk with. Even if I’m feeling well and in remission—the disease stays top of mind and I start to question my own well-being and health.

Like everything in life, finding balance and making time for self-care is paramount. The IBD family is a fantastic community of support. I am just one piece of the advocacy puzzle. It’s all about maintaining that balance in a healthy way, recognizing when the fatigue is taking over—and knowing when to take a breath and step away. I’m much better able to connect with people when I’m recharged and energized. If I’m at the end of the rope all the time, I simply don’t have anything to give, and everyone loses.

blog photoI offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.

Recently, my husband said we should start a new rule in our household, no phones after 8 p.m. I was thrilled with the idea. So often when we put our son to bed we resort to hanging out on the couch, with the TV on and phones in our hands. Much of that “free” time I used to spend responding to messages from those seeking IBD support. Sometimes you just need to put down the phone and recognize how important those right in front of you are. The people who are by your side every single day. Your family. Your caretakers. Show them the love and the attention they deserve. Nurture the relationships that matter most to you. Be present in the moment.

Compassion fatigue ebbs and flows. Like anyone who battles fatigue from IBD, some days I feel like I can take on the world and spend all my free moments on the phone or responding to emails. Other days it takes A LOT of effort for me to email back someone who I’ve never met and discuss why I chose Humira, how my pregnancy was with Crohn’s, etc. Time is precious. I absolutely hate not responding almost immediately to everyone who reaches out, but please be patient with me.

IMG_0535As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.

My call of action to you

When you reach out, if it takes a few days for me to respond—don’t think it’s because I don’t care or won’t reply. I will. If you have questions about why your prednisone is making you feel a certain way or how to do a colonoscopy prep—check with your GI first. Oftentimes many questions and concerns are covered extensively on blogs and in articles—a simple Google search may give you all the information you need. Lastly, know my concern and wish to help is genuine, but there’s only so much of me to go around.

I’ve been in the hospital bed. I’ve been too weak to walk up a few stairs. I’ve been on 22 pills a day. I’ve sat on a news desk and anchored countless shows while dealing with my disease in silence. I’ve woke up on my wedding day unsure of what my disease would do. I’ve been pregnant and dealt with the fear of flaring while creating a life. I’ve done a lot as a patient and a person. So, when I’m feeling well and trying to enjoy the feel-good days that I have…that can be taken away in the blink of an eye, please understand that I’m here for you, but need to also take time for me.

I’m going to leave you with this quote from Daniel Garza, an AIDS, Cancer and Ostomy advocate. Daniel shared this eloquent description of patient advocacy during the HealtheVoices conference I recently attended in Chicago.

“We all have this fire. We’ve been in quick sand and high tides and made it to the end. Despite the doubts, after everything, we don’t want other people to go through it. We’re the coat we put on the puddle, so people don’t get their feet wet. We don’t care if we get dirty again.”

In closing, allow me to continue to be that coat on the puddle for you, but please have a little patience with me.

APPLY NOW: Lyfebulb & UnitedHealth Group launch first-ever Innovation Challenge in IBD

As patients, we have power. We have the ability to use our experiences to shed light on the constant uphill battles we face in all facets of life as we take on inflammatory bowel disease. LyfebulbXUnitedHG Summit&Award YellowWe have the opportunity to serve as patient advocates and leaders in our respective health communities and be a voice for those who suffer in silence. As advocates, we can share the challenges and the triumphs. We can articulate where the roadblocks are, where we struggle and come up with lifechanging solutions—not only for ourselves, but countless others.

This is where Lyfebulb and United Health Group come in. They recently launched the first-ever Innovation Challenge for Inflammatory Bowel Disease. The Challenge will recognize and award top patient entrepreneurs developing innovative ideas for better management of IBD using healthcare information technology, medical devices, consumer products or services. Get this—the top three winners receive $25,000, $15,000 and $10,000 respectively!

I had a chance to chat with Lyfebulb’s, CEO and Founder, Karin Hehenberger, M.D., Ph.D. about the Innovation Challenge for IBD. Karin says, her main mission is, “to reduce the burden of IBD, by accelerating the pace and adoption of innovation in the disease state, while raising awareness for the conditions.” Karin Standing -2

Karin is a chronic illness patient and advocate herself. Quite simply—she gets it. She lived with Type 1 Diabetes for nearly 20 years before she decided to share her story. Complications of her diabetes led her to need a kidney and pancreas transplant. Through these challenging life experiences, she found her passion for making a difference.

“My intense personal experiences enabled me to realize key insights. I started thinking about how many daily issues I had lived with as a person with T1D and came to the realization about how my own patient journey and professional expertise, could help drive research and innovation.”

In years past, Lyfebulb has held these types of challenges for diabetes and cancer. Past winners invented everything from a clever solution to ensure injected insulin was still potent and had not gone bad due to storage issues to creating a natural and better bone replacement device for those battling cancer who have experienced bone deterioration.

Much like those diseases, IBD impacts all areas of life. Karin believes there is still much we can do in the IBD space when it comes to awareness and education. It’s her hope this Innovation Challenge for IBD will help raise the level of attention on the complexities and challenges facing those of us in the patient community.

How to apply

You are eligible if:

  • You work on innovative ideas and concepts for better care and management of IBD using healthcare information technology, medical devices, consumer products or services; and
  • You, or a family member of loved one, live with IBD; and
  • Your idea is something other than a pharmaceutical or diagnostic innovation.

Click here to apply. The deadline to apply is Thursday, June 7 at 11:59 P.M. ET.

Judging criteria

Lyfebulb and UnitedHealth Group will gather all submissions and will review them for eligibility.

The judging panel will look for evidence in the following categories:

  • Patient Entrepreneur story
  • Degree of innovation
  • Impact on patient needs
  • Feasibility of development and implementation

Lyfebulb_April_2018_rb_0172lyfebulb_april_2018_rb_0172From the submissions, 10 finalists are selected to present at the Innovation Challenge in late July. All finalists are flown to the summit in Minnetonka, Minnesota and treated to two days of interactions with other finalists, the jury and with Lyfebulb and UnitedHealth Group employees during one on one meetings, group meetings, presentations and meal gatherings.

If you are chosen to attend the Innovation Challenge summit, you will pitch your idea in front of the jury and audience composed of Lyfebulb, UnitedHealth Group members and invited guests. Best of luck to all the applicants. As a Crohn’s patient of nearly 13 years—thank you for going above and beyond to make a difference in the lives of others!