Inside my head with chronic illness

Stephanie Gish

For three years I walked with a broken sesamoid bone in my foot while on active duty in the Army. To this day, I still remember the constant looks from people who clearly thought I was either making up or exaggerating the pain I felt. They gave me looks in passing, judgement written on their faces, that I’d never before received in my life. 

I tried hard to never complain. Silent deep breaths and closed eyes often got me through most tasks. The most prominent lesson I learned during my time in the Army that still echoes in my mind today is, “put your head down and drive on.” That mantra got me through a 12-mile ruck march, numerous physical fitness tests, obstacle courses, and simply just walking from my car to my desk–all with a broken bone. Maybe I received those judgemental looks because all they saw was me quietly going about my day, doing everything that was asked, and holding back every scream and tear that wanted to come–replaced by a smile.  

In many ways, I feel the same now with Crohn’s Disease and kidney disease as I did with a broken foot. While my Crohn’s continues to be under control, none of the people in my life now saw me during my worst flare up when I quickly withered away and battled debilitating pain and uncontrollable bowel movements of blood and mucus that occurred more than 30 times a day. During my worst flare up, I couldn’t leave the house if I wanted to, I couldn’t/wouldn’t even leave to go to the hospital…and it was a time that I literally spent alone that dragged on for two months. The friends and family I have surrounding me today never saw that part of my life and don’t know the extent to which I carry the mental wreckage/baggage from it. Because, I’ve never let them. I’ve carried a fear for almost 15 years that lingers in the back of my mind (nothing really ever makes it go away) that it will happen again and will be worse than before. 

Having helped other Inflammatory Bowel Disease (IBD) patients share their stories during the past two years on my podcast, I’ve heard firsthand their many stories of doing everything right and still suddenly crashing down from remission because IBD decided it was time to flare. The fear of another major flare up is always there, but every time food or stress brings about a minor flare, blood, or pain, the fear becomes consuming. While I’ve been lucky to have a few gastroenterologists who have supported my decisions to try and navigate this disease over the past few years without medications, in the end, they’ve all said basically the same thing, which is along the line of, “I’ll be here to catch you when you fall.”

Now with my kidneys demanding to be the center of attention these days, I find myself withdrawing deeper into my thoughts that inevitably wind their way around to the worst-case scenario. I’ve been lucky to have a nephrologist who describes himself as OCD, who takes me seriously, and makes me feel that I am in the right place and in good hands. But outside of him, I see and feel those same dismissive looks I had with my foot from others who don’t think I’m sick or have anything to worry about. I still wear the same smile I did back then, but this time it’s hiding fatigue, nausea, the disruptive nights of being unable to sleep, and just not feeling well. Acutely aware of how others perceive me (or how I think they perceive me), I find myself constantly walking the fine line between sharing too much and sounding like a broken record and not sharing enough, never letting those close to me in.

Those who are fighting chronic illnesses will often understand–and there is a certain type of comfort in knowing we are not alone in both our physical and emotional battles. To others, however, I often wonder if people look at us and simply think, “just go to the doctor, get some tests, take some medications, and, ta-da, be OK.” But it’s us, the ones fighting, who know that these diseases are often a waiting game and unpredictable. If and when things do change, it will happen quickly. 

As I currently battle Crohn’s Disease and kidney disease, I don’t want to be coddled, but I also don’t want to be ignored. I also want to learn to let others in. So, basically, I don’t know what I want. It’s hard to describe to those who don’t walk the same path.

So what’s really happening inside my head? How am I doing, when you ask? 

Well, the first part of that answer that I never say, is that I’m tired. I’m scared. I’m sometimes in a great deal of pain, but you’ll only see me smiling. And, because I’m grateful to be alive, grateful that I am receiving amazing medical care, and grateful that I can still do the majority of things I want to do, the second part of how I’m doing–the part that I say aloud–is simply, “I’m good. How are you?”

* * *

I’m sharing this for the many other autoimmune warriors who I know have felt these same things and giving others a glimpse into the endless mental loops we often can’t get ourselves out of. If you’re a fellow warrior and find this resonates with you, please share in the comments!

Angela Spaulding: Crohn’s Warrior & Runner (E64)

In today’s episode, Angela Spaulding shares her 16-year journey with Crohn’s Disease. Diagnosed in her early 20s, she spent many years angry–angry at the diagnosis, at the disease, at the world–and in denial. Like many others, she was forced to navigate the highs and lows of Inflammatory Bowel Disease and eventually found humor as a way to help shift her perspective.

Continue reading “Angela Spaulding: Crohn’s Warrior & Runner (E64)”

Shelly Sulfrain: Ulcerative Colitis Warrior (E63)

In yesterday’s episode, 12-year Ulcerative Colitis Warrior Shelly Sulfrain shares her IBD journey and how an ileostomy gave her back her life. At the age of 29, Shelly was working as a pharmacist and enjoying life, having just finished school. Then, her first symptom of blood in her stool led her to a trip to the emergency room. It took a few more visits to her primary care doctor and eventually a gastroenterologist to finally diagnose Ulcerative Colitis. From there, she faced a number of highs and lows as she cycled through medications and faced life-threatening side effects throughout the course of her journey. 

Continue reading “Shelly Sulfrain: Ulcerative Colitis Warrior (E63)”

Logan Crumrine: Disability Process and IBD (E62)

In today’s episode, Logan Crumrine, a Crohn’s Warrior for nearly 30 years, joins me for an open and honest conversation about the disability process. Logan shares his experience of filing for disability due to Crohn’s Disease, shedding light on the entire process and answering many questions submitted by our listeners. 

Continue reading “Logan Crumrine: Disability Process and IBD (E62)”

Raina O’Dell: Ulcerative Colitis Warrior finding the silver lining in every day (E61)

In today’s Crohn’s Fitness Food podcast interview, Raina O’Dell shares her journey with Ulcerative Colitis, talks about the growth and transformation in her life from @rainavsfood to @its.just.raina, and how she’s been able to stay positive – always searching for the silver lining.

Continue reading “Raina O’Dell: Ulcerative Colitis Warrior finding the silver lining in every day (E61)”

Angie Venetos: Crohn’s, perspective, and compassion (E60)

In today’s episode, Angie Venetos shares her Crohn’s Disease journey and how it’s impacted not just the way she views IBD, but life overall. From learning to adapt her workouts by listening to her body, to seeing how strong her support network is from the love of her family and friends, she’s rewriting the story of Crohn’s Disease in her life and is working to share a message of hope, compassion, and awareness.

Continue reading “Angie Venetos: Crohn’s, perspective, and compassion (E60)”

Bec Simson: Family, IBD, and Rugby (E59)

In today’s episode on the Crohn’s Fitness Food podcast, Bec Simpson shares her journey with Crohn’s Disease and how she balances life, competitive sports, work, and family. Her journey began almost a decade ago when she struggled with symptoms that she thought were due to IBS, which was common in her family. But in 2011, after running out from the class she was teaching with an urgent need for the restroom, she knew she needed to see a gastroenterologist. 

Continue reading “Bec Simson: Family, IBD, and Rugby (E59)”

New fave food: Gut Happy Cookies

Steph with Gut Happy Cookies

I’m always on the hunt for gut-friendly foods made with high-quality ingredients…and even more so when they’re low carb and keto friendly 🙂 A couple of weeks ago, I took an honest look at what I’ve been eating for the past 6-9 months. And the truth is, when I’m following an alternate day fasting schedule, I can tolerate a much wider variety of foods than I ever could before (excluding my pre-Crohn’s days…I could eat anything before IBD came into my life!). 

Continue reading “New fave food: Gut Happy Cookies”

Crohn’s Fitness…Fasting!

Crohn’s Fitness Food…it’s how you know me on my blog, Instagram, Facebook, and podcast…but sometimes, I feel like it should be Crohn’s Fitness Fasting. It’s been almost two months since I switched back to an alternate day fasting (ADF) schedule and I wanted to share some of the positives that have happened since then and why I continue to love and promote the benefits of fasting for better health. 

Continue reading “Crohn’s Fitness…Fasting!”

Nicole Candelaria: IBD Journey Part 2 (E58)

Crohn's Fitness Food podcast cover with Nicole Candelaria part 2

In today’s episode, we continue Nicole Candelaria’s story from her decision to begin traveling to and from New York to see a gastroenterologist who specializes in IBD. Everything happened quickly as her new doctor was determined to not let her suffer any longer, but she quickly became weary of the travel and the reluctance of her doctors in Florida to cooperate. 

Continue reading “Nicole Candelaria: IBD Journey Part 2 (E58)”