Inside my head with chronic illness

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 even just walking from my car to my desk — all with a broken bone. Maybe I received those judgmental looks because all they saw was a girl quietly going about her day, doing everything that was asked and holding back every scream and tear that wanted to come, but was 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 disease continues to stay in remission, no one in my life now ever 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 have left the house even if I wanted to; I couldn’t/wouldn’t leave even to go to the hospital. 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 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 many stories of doing everything right and still suddenly coming out of remission because IBD decided it was time. 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: 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 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 we are the ones fighting, the ones 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 want to learn to let others in, but 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? 

The first part of that answer — that I never say — is that I’m tired. I’m also 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 my answer to how I’m doing, the part that I say aloud, is simply, “I’m good. How are you?”

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I’m sharing this for the many other autoimmune warriors who may 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!