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.

Taking on fatigue as a mom with Crohn’s disease

I hear my baby saying “mama” gleefully from the playpen. Anxious for attention and snuggles. I hear this as I’m sitting on the toilet with the door open, paying the price for the cup of coffee I just consumed. It’s one of those days as a mom with inflammatory bowel disease. The all-encompassing fatigue is taking hold. I knew this the minute my eyes opened, and I heard Reid in his crib, despite a restful eight hours of sleep. If you don’t have IBD you may wonder what I’m talking about.

Let me try my bIMG_6729est to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.

As my husband helps me unload the dishwasher, I tell him, “I’m so fatigued”…he laughs a little and says, “well, you’re 34…you are getting old.” I explain to him it’s my Crohn’s. Sure, I may be in “deep remission”, I haven’t been hospitalized with a flare since my bowel resection surgery in August 2015 (*knocks on all the wood), but that doesn’t mean the disease doesn’t impact my daily life. My husband is amazing and never says anything malicious, but unless you live it, you simply can’t comprehend it.

I’m going to be vulnerable here. Please no judgement. The clothes I washed more than five days ago, are still in the dryer. Each day I told myself I needed to walk down 13 stairs and bring them up, but it felt like too much. This morning as my husband got ready for work, needing his jeans…I remembered…they were still in the dryer. I felt like a failure. As I rocked my son in his nursery today, it took too much out of my legs to be in motion. All I was doing was sitting, his little body on my chest. But the rocking felt like too much. As I laid him down for a nap, I went back and forth in my mind about whether I could muster up the energy to shower. I chose to. Mid-shower, I had a brainstorm to sit down on the seat and take some deep breaths while the warm water hit my body. When I stood up, I honestly couldn’t remember if I had put shampoo in my hair yet or if I had washed my face. Literally no clue. These are just a few examples. But this is the reality of being a mom with IBD.

I started beating myself up over the fact that the past two days I may have overdone it. IMG_6646Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.

Here’s my advice for anyone with chronic illness, specifically IBD, especially the parents out there. remedy-nsmith-stlouis-1204

  1. Try not to beat yourself up over it. This too shall pass. You won’t feel this fatigue every day. As a matter of fact, days ago I had the music playing and I was dancing around with my son as I cleaned the house. I felt SO happy and so energetic. Focus on those times to get you through.
  2. Self-care, self-care, self-care. Whether it’s going to get a massage, exercising, sitting on the couch and enjoying some tea or going to Target to shop by yourself. Do what makes you feel at ease. Do something for yourself every day.
  3. Vocalize your exhaustion. If you don’t communicate your struggles, you won’t receive the comfort and help that you need. You are not admitting failure. You’re not waving a white flag and giving into your disease. Rather, you’re being strong enough to realize, in this moment, on this day, you need a little boost from those around you to get by.
  4. Ask for help. Boy do I struggle with this. But, it’s imperative. Especially for first-time moms. Being a parent is hard work. Being a parent with chronic illness is on a whole different level. Hold your tribe close and call on them when you need them. You won’t regret it.
  5. Rest. It’s ok to lay on the couch if you aren’t feeling up to doing chores. It’s ok to say no to a night out with friends. Give your body what it needs. Listen to it. This fatigue is real and by not listening, you’re only feeding into the problem more. You’ll thank yourself later.

I recently came across a statistic this week on Twitter from the Congress of ECCO (European Crohn’s and Colitis Organization) IMG_6342that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.

Fatigue has a significant impact on the quality of life and needs to be talked about. If you’re like me and feeling fatigued, I hope you feel empowered to share and do what you can to combat it. Just know you are not weak, you are not lazy, fatigue impacts everyone on this journey differently. And most importantly, you are not alone.