Physical and mental health, and their impact on creativity and productivity
My name is Michael, and I have Crohn's disease.
I hate that sentence...
Way back in 1995, after suffering for seemingly endless months from severe abdominal cramping, nausea, weight loss, and other symptoms not fit for print - I had dropped down to 89 pounds on my 5'11" frame - I was finally diagnosed with Crohn's disease, a chronic condition which can cause inflammation, scarring, and narrowing throughout the digestive tract.
At the time, groggily coming back to it from the anesthesia for the colonoscopy I'd just undergone, I didn't really know what chronic meant when I heard my doctor explaining the diagnosis to my parents. Did it mean fatal?! There's a scary thought... but I was so out of it, and in so much discomfort, that I didn't dwell on that question for long.
I was mainly feeling hopeful that, with the diagnosis, relief would soon be on its way. I was tired of the almost constant pain and discomfort and sitting on the sidelines of life.
Keeping Crohn's in the Shadows... Until I Couldn't
Not long after I started the regimen of 16 pills a day to try to get the disease under control, I decided, with all the bravado of a stubborn teenage kid, that I was not going to let Crohn's define me or dictate my life. I didn't want it to be something I focused on day-to-day, I didn't want pity from others, and I didn't want to be known as The Guy With The Disease.
As I started applying for colleges, it was even suggested I include a note about my health struggles to explain a relative drop in my grades: I adamantly refused as I wasn't going to use my diagnosis as an excuse or as leverage.
I've eased that stance a bit as I've grown older and, in theory, wiser. Eventually, I also wasn't given much choice in the matter.
In 2009, when my colon rudely and inconveniently decided to perforate one evening after dinner - sending me to the ER and eventually the ICU after emergency surgery to remove two-thirds of my colon and about 18" of my small intestines - I was forced to face my reality as I recovered in the hospital for the better part of a month.
I'd overcome prior setbacks that had sent me to the emergency room a few times in 2005. A change to a biologic - Remicade - eventually healed the severe damage that had been done to my colon and all seemed well for a few years. My doctor speculated that scarring from the disease was what led to the rupture: I certainly had no warning that anything so dire was imminent.
Delirious with fever all I remember is singing "I will survive" over and over
Although I don't remember much of the experience, it's my understanding that my girlfriend at the time received a call from the hospital around midnight a few days after my surgery, suggesting it may be wise to come and see me as I was being taken to the ICU. Delirious with fever from the infection that resulted from my colon going pop, all I remember is singing "I will survive" over and over as they wheeled me out of my post-surgery recovery room.
My only other memories of the initial post-surgery recovery are asking my family if I had a bag (as in a colostomy bag) when I first started to come to (I did not, thank goodness); hazy impressions of friends and family visiting; and then - as the fever and delirium took a stronger hold - frantically hitting the morphine button and then the call button for the nurse as I was convinced I had been left in some dark, forgotten recesses of the hospital for days on end.
I can only assume that was around the time the decision was made to send me to the ICU.
Eventually, once I was thankfully back on my feet and back at work, I mostly went on with my life. Considering what I had gone through, I couldn't exactly pretend nothing had happened: in addition to regaining lost muscle mass, I had to learn to accept life with a significantly altered physiology. For the most part, though, my day-to-day was not too terribly impacted, and I knew I was still far better off than many others that have Crohn's or Colitis (or other often-unseen illnesses).
As I regained my strength and stamina, I wasn't really feeling limited in any way. A few years later, I moved to Texas to further my career, ended up visiting Ireland a couple times on business trips, fell in love with photography through those experiences, and happily went about embracing a newly restored love for exploring the outdoors and all the physical activity that came with it.
A Broken Truce: Plummeting Physical and Mental Health
Fast forward from the events of 2009 to late 2021: Twelve years with some inevitable ups and downs but, overall, things were going pretty well... until they weren't.
The gastroenterologist I had seen since the diagnosis back in my junior year of high school announced his retirement around the summer of 2021. As a result, come October of that year I found myself going through the new patient routine with a new digestive disease specialist. I was feeling pretty rundown - I had been for quite a while - but I attributed it to stress at work and went into the first visit not expecting any surprises.
Some quick background: In 2019, the job I loved was pulled out from under me during a significant corporate restructuring (my position was eliminated). Fortunately, with 15% of the office suddenly unemployed, another position was offered to me in a different department. Unfortunately, it turned out to be little as described and I soon found myself profoundly overworked, overstressed, and unhappy.
what I didn't know was that my Crohn's disease was not actually in remission
While I'm sure the circumstances at work weren't helping, what I didn't know until seeing the new doctor was that my Crohn's disease was not actually in remission. I also learned that the number one symptom of active disease for men my age is... fatigue. Surprise!
I never mentioned the tiredness I'd been feeling to my previous doctor as I otherwise felt fine. Even as recently as May of 2021, when my friend Jon and I hit the road for Oregon, I had been feeling pretty good once I got away from the job for a bit.
Shortly after receiving that surprising news from my new doctor, things at work became untenable and it was clear that I'd be leaving the company after nearly 30 years. I was able to get on a new drug regimen before leaving, and I felt confident that my health would soon be moving in the right direction as I set out for the uncharted waters of self-employment as a full-time photographer.
As (bad) luck would have it, things haven't been quite the smooth sailing I had hoped for.
Everything got off to a strong start. By March of 2022, I was feeling great as I headed out for a trip to Utah, my first big outing as a self-employed photographer. My energy levels were good, I'd been working to get into hiking shape, and I was starting to get into a better place mentally after decompressing from the previous two and half years of chaos at work. All systems were Go, and the trip went well.
I went on to have a pretty productive summer, editing all my photos from Utah in record time and cranking out nearly 20 videos for my YouTube channel from April into September while I fumbled my way through my first year of post-corporate freedom and tried to figure out the best path forward.
Then the wheels came off.
I was barely even able to sit upright as a tsunami of fatigue hit me
Starting in September, just as I was able to start getting back outdoors after a hellacious summer here in Texas, I suddenly found myself completely wiped out after any kind of physical activity. I was able to go out and hike without issue, but upon getting home I'd crash, barely even able to sit upright as a tsunami of fatigue hit me. I had never felt anything remotely like it before, and it would, at times, take me one to two full days to recover.
Coinciding with the bouts of severe fatigue, my mental health also began to deteriorate.
I had already had some ups and downs throughout the year, which I had fully expected given the major life-upheaval of leaving my job at the company for which I had worked my entire adult life, coupled with the major lifestyle change of working for myself. But this was far beyond a simple down day or two.
Another key symptom of Crohn's - and many other chronic conditions - is depression, often tied to the fatigue that can come with chronic conditions, not to mention the burden of just not feeling well.
Come October, our oldest dog was diagnosed with cancer and had surgery, and I had to shorten, or outright cancel, my fall road trips. I was secretly relieved when it became clear I needed to skip my planned return to Utah in November as I had been worrying how I would manage it given my low energy levels and struggling mental health.
On the flip side, aside from the stress of worrying about our dog, I was then also stressed that I was cancelling my big fall trip. That's kind of a big deal when one is trying to make a living from photography.
Thankfully, I was able to get out locally several times as the fall color peaked in Texas, but each time I paid the price. I was grateful that the fatigue wasn't limiting my ability to hike about with the camera, but it was still extremely frustrating to lose half a day or more when the fatigue swept in afterwards.
I wanted nothing more than to just go into the bedroom and cry
Amidst all that, my doctor was fighting to get my treatment increased - I've been on Stelara injections for about 14 months now - from once every eight weeks to once every four weeks to try to get the Crohn's into remission, but insurance was dragging out the authorization process, adding further stress and frustration to the whole situation.
January saw a further spiral down, both physically and mentally. Instead of feeling weary only after physical exertion, fatigue was a constant companion more days than not.
One particular day, I found myself sitting on the sofa while my partner was at work, feeling tired and depressed, frustrated that I had no energy and, admittedly, beating myself up for not working on anything on my to-do list for the photography business. I was stuck in a feedback loop of anxiety and negativity and was spiraling lower and lower mentally.
That day, I wanted nothing more than to just go into the bedroom and cry as the grip of anxiety tightened around my chest. I've felt like that only once before, when I was a kid turning around and walking back inside the house one morning because I was dreading another day of bullying at school.
I'd had "feeling blue" days as an adult, but nothing remotely like what I experienced on that January day. Everything came to a head: fear, frustration, and financial worries; feeling worthless, lazy, and incapable; severe fatigue, depression, and anxiety. All of it.
It was pretty scary.
I talked to my doctor about it, which is testimony to how much that episode shook me up: I've generally followed the "stiff upper lip" mentality when it comes to talking about my feelings. Thankfully, I wasn't considering self-harm, and simply discussing it helped me understand and accept what I was going through. My doctor also felt confident that my mood would likely improve significantly once we got the disease back under control, giving me a bit of hope to latch onto when I needed it most.
Even so, all the momentum from my productive summer was lost over those few months.
I was flying high by late March as I triumphantly headed back to Utah
Thankfully, around that lowest of low days in January, the new Stelara dosage finally got approved by insurance after three months of nonsense. Between the psychological boost that provided and having the privilege of sticking a needle in my belly twice as often, I was flying high by late March as I triumphantly headed back to Utah. I wasn't as fit as I'd have liked after the prior months of extreme fatigue and malaise, but I was feeling pretty darn good going into the trip.
It was amazing to recognize that, just six weeks prior, the thought of being by myself in remote areas, saddled with the fatigue and depression I was carrying, was only adding to my anxiety. I had been considering cancelling the trip again, although I was also fearful that doing so would just make matters worse mentally.
My energy and mood remained on an upward swing throughout the spring, even through the unexpected sudden decline of our dog, and her eventual passing in the weeks after I returned from Utah. As heart wrenching as that was, I was thankful I was in a much better place mentally when all that took place.
With my restored energy came a restoration of my confidence, as well, and I finally got back in the YouTube game after a six-month hiatus and started whipping up blog posts for my new UNFRAMED series and my Utah trip reports. Things were getting back on track, and I was starting to see a clearer path forward.
By mid-May, the test I perform regularly to monitor inflammation markers - the primary indicator of Crohn's activity - came back with results indicating that I was, indeed, in remission for the first time in at least 18 months. Cause for celebration!
Not so fast...
Within a week or two of getting those test results, after a few months of feeling good physically and mentally, I started feeling worn out again. I performed another test: the results came back worse than they've been at any point aside from before I started on Stelara over a year ago. Just like that, I somehow went from clinical remission to a completely demoralizing regression.
Almost everything once again came to a screeching halt.
Creativity, Productivity, and Managing a Chronic Disease
Many artists struggle with mental health. I'm hardly unique in that regard, although it's taken me a while to even acknowledge that it's been a problem. Thankfully, I think I can honestly say it's really only been a significant - albeit unrecognized - issue these last two years or so, although I can now look back at other times and admit that signs of depression and anxiety were likely popping up here and there over the years.
What we may see in others as laziness, rudeness, or apathy may not be a fair representation of who an individual really is
I also appreciate that I'm not unique in fighting a chronic disease. Millions of people suffer silently every day, and those of us on the outside are none the wiser. Us humans are like icebergs: what's going on beneath the surface is often unknown.
What we may see in others as laziness, rudeness, apathy, or any number of less accepted social behaviors may not be a fair representation of who an individual really is. Assume positive intent: we have no idea what burdens they are carrying in the shadows.
One thing I have come to realize is that I'm not really doing anyone any favors by putting on a brave, smiling face and pretending everything is fine.
Talking about our individual struggles helps: it helps me by giving voice to my doubts, fears, and frustrations instead of keeping it all bottled up inside, endlessly building pressure and a feeling of aloneness, and it hopefully helps others battling their own demons know that they are not, in fact, alone.
As I've become more open about having Crohn's Disease and some of the struggles I've faced, I've been surprised at how many others have opened up and shared similar stories.
As far as my own struggles go since shifting to full-time photography, perhaps I was naive, but it has shocked me how much my productivity and creativity ebb and flow with my physical and mental wellbeing. Over the past 18 months, since leaving the corporate world behind, I've spent more than my fair share of time beating myself up for not Getting Shit Done when things haven't been going well.
My motivation withers, my mental acuity dulls, and my creativity cowers in the corners of my mind
I get hit with a sucker punch from Fatigue and, soon after, Depression is kicking in the door. My motivation withers, my mental acuity dulls, and my creativity cowers in the corners of my mind.
Frustration then breaks a window to join in, and then - unwarranted but inevitable - Self-Loathing enters the fray as I berate myself up for not being able to overcome the challenge:
"I'm not tough enough."
"I'm not strong enough."
"I'll never succeed if I don't man up."
So on and so forth... fun stuff.
I also fall into the trap of comparing my productivity to that of others. For instance, I'm currently reading yet another biography on Theodore Roosevelt. His life and accomplishments fascinate me, and I especially admire his perseverance in the face of his own health issues, and his work ethic in general.
I can't help but start to hold my own circumstances up against his, questioning why I can't do better. His famous "Get action" quote inspires me, but it can also fuel a torrent of negative comparisons when I'm at my low points:
"Get action. Do things; be sane; don't fritter away your time; create, act, take a place wherever you are and be somebody; get action." - Theodore Roosevelt
Just typing out that quote gives me a surge of motivation.
Of course, it's not just a distant historical figure I measure myself against. When I'm having a bad day, the insidious self-doubt creeps in as I compare myself against other photographers, be they friends or just people I admire.
It's often in the frame of working to achieve financial security and success as a photographer: "If I don't have the energy [today/this week/this month], how will I ever succeed in a world with someone like that? Look at everything they're accomplishing!"
On my off days, at best, I may struggle to find the energy or motivation to work on a blog post or edit photos, or work on one of the countless business-related tasks on my to do list. It's been 10 weeks since I returned home from Utah: I've edited zero photos. Between the loss of our dog and the turn for the worse with my health, the creativity I need to do so just hasn't been present.
At worst, the off days breed anxiety - something I never thought I'd feel to such an extent - which manifests itself as a complete inability to put myself in front of the camera to produce new YouTube content, or as fear and self-doubt in taking the next steps on some bigger projects I'm slowly trying to get off the ground.
Essentially, I've had - am having - a crisis of confidence, something I never really faced throughout my former career.
Accordingly, I feel I'm not accomplishing anything (even when the evidence may point to the contrary).
I've finally recognized that I need to give myself grace
It's taken me time to get there, but I've finally recognized that I need to give myself grace - that I deserve some grace - and accept that, oftentimes, it's better to listen to my body and my mind rather than trying to force myself to power through the rough days. I'm far from perfect at granting myself that gift of grace - it's extremely difficult to tamp down the frustration that comes with it all - but I am doing a bit better at managing things mentally.
At the end of the day, I also have to trust in the process.
Sure, I wish I wasn't struggling through the health issues or, at the least, it would have been nice if they had been identified sooner, but, well... it is what it is. There are things I can do to try to help keep things moving in the right direction, such as modifying my diet or simply being better at getting a full night's sleep, or being active and exercising when I have the energy to do so.
I do, to some extent, have control: the rest of it is up to trusting my doctor and believing there's a solution. I've seen signs of it, June's unexpected setback aside. Another quote, from an unlikely source, that has inspired me through tough times comes to mind:
"You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That’s how winning is done! Life was never promised to be easy." - From the movie Rocky Balboa
In the meantime, I've learned to throw myself into my work when my body and mind are up to the task. I can be incredibly productive when I have the energy to Get Action. "Strike while the iron is hot" is an apt life motto these days.
As I'm working to finish writing this, I've had a string of tough days. Tough weeks, really, but the past days have been even more of a struggle. I administered my latest dose of Stelara a few days ago, which tends to make me tired for a day or two: this time, the fatigue has been more pronounced.
But today was better than yesterday, which was better than the day before.
The creative fire will spark again. The productivity will come as I seize the good days.
And I'll keep moving forward.