A joyful life is inherently brave
Dear Team Joy,
Joy is looking a little different this week than I expected. I was not intending to write about my chronic illness so soon, but after a trip to the emergency room this past Friday night, it feels like the right place to start. I want Team Joy to be a place that connects, inspires, and challenges us. But most importantly, I want it to be a place where I/we tell the truth; about how hard and complicated and beautiful it is to be human. Sharing my truth and receiving yours (should you choose to share back with me), is the highest form of respect I can offer.
So here goes- the idea I am sitting with this week: cultivating a joyful life is inherently brave.
To walk you through my joy this week, I am going to take you on a journey through my last year on getting diagnosed and living with Crohn’s; which has come with an overwhelming sense of loss, and has also changed my perspective on joy.
Last April, at almost exactly this time, I began exhibiting mysterious symptoms; mainly a sore throat and fatigue. I quickly ruled covid out through testing, so I assumed it would pass with enough rest, fluids, and Nyquil. A week later, I had sex with my partner and it felt like my insides were on fire. For the entire next week, I braced every time I needed to go to the bathroom, for the inevitable pain that would shoot through my whole pelvic region. What in the world was going on?
I began a tour of doctors; urologists, gynecologists, internists. Everyone had tests to run, and medications to prescribe, but nothing addressed the source of my pain. I tried to keep working, but I was spending too much time crying. A week later I went on medical leave.
I began noticing blood in my poop every couple of weeks, which my internist chalked up to hemorrhoids. A gynecologist recommended I get a colonoscopy, but I was too nervous. I had never been under anesthesia, I had never been this sick, and on some level I wasn’t ready to face it. This spiraled down slowly over the course of three months, until a weekend last July where I began having stomach convulsions that made me feel like I was in labor. I was pooping nothing but blood every couple of hours. My dad took me to the hospital where he works for me to get evaluated by a gastroenterologist. I was in so much pain by this point, that she scheduled a colonoscopy with me for the next day. If you haven’t had a colonoscopy before, it requires you to take 2 weeks of laxatives over the course of 12 hours. My stomach was already on fire; running laxatives through it, turned into one of the longest and most painful nights of my life.
24 hours later, while I lay in recovery post procedure, the doctor came to inform me that I had Crohns; which then changed to ulcerative colitis, and most recently has changed back again. After months of traveling down the mysterious symptoms train, having a diagnosis was a life raft; it meant I wasn’t crazy, and it meant I could begin treatment. But it was also world-shattering. I have a chronic illness. Chronic being the key word…meaning never going away. This would be a journey to manage for the rest of my life. At 27, nothing up until that point had ever been for the rest of my life. It was too big to take in. Too unfair to accept.
Over the next 6 months, I slowly began working through some hard questions all of which seemed to center on loss.
Who am I as a “healthy person” if I am going to be reliant on infusion medicine for the rest of my life?
Who am I as a partner if sex is painful?
Who am I as an athlete if running is painful?
Who am I as a friend if a lot of the traditional expressions of “fun”, like alcohol and junk food, are out for me?
Who am I as an employee if some mornings I wake up with brain fog, or my pelvic pain is too intense to focus?
Who am I now?
Many of these limiting questions are still top of mind for me. But this illness has also radically shifted my perspective on what it means to build a joyful life. Even as the unknown scared me, I slowly began to accept that I would need to build back my life slowly, and differently.
I would need to ask for help. Pre-diagnosis, I took great pride in being independent. Doing things on my own often felt safer, because I didn’t have to rely on anyone else. I preferred to be the friend to offer help. Now I was the friend asking. Can you sit in sadness with me because I am having a hard day? Or asking my dad to come to my appointment with me because I didn’t want to go alone. I hated the neediness of it. And yet when I was brave enough to ask, and my people showed up, there was joy. This impossible thing became slightly easier.
I would need to go slow and often let my body lead. Pre-diagnosis, I was a zero or 100 kind of person. Do it to the best of my ability or don’t do it at all. How tiring and oh so much pressure. How many things can I do at 100%? I think the logical answer is 1. :) Now with this illness, that 100% is even less. But I have created new space to actually let my body tell me what I need. When my body is feeling really tired, I try to take a nap. When I am feeling achy and in pain, I try to stretch. I have set my life up to prioritize regularly meeting with a nutritionist, psychiatrist, and pelvic floor therapist. After running my body through 4 years of consulting, I was so used to viewing my body as the vehicle that carried my brain around. Listening and then actually prioritizing what my body needs often feels like a revolution.
I would need to stay in integrity. It wasn’t going to be possible to work a job that didn’t align with me in the hopes that it would pay off later. It had to feel good now, because my body feels less stressed and has more energy when I feel aligned, and because life is seriously too damn short.
Circling back to this past Friday- I had an allergic reaction to my Crohn’s medication, and I was told by my doctor to head to the emergency room. I had done everything right, and yet here I was with my body on fire again. Ultimately, after 6 hours of waiting in the ER, I was given an IV of steroids and benadryl. I have spent the last 5 days on steroids, and although my body is a bit out of whack the allergic reaction symptoms are gone.
Despite this horrible thing happening that was out my control, here is what I did well last Friday:
I called 911 and got evaluated by EMTs.
I did not get on the plane to my college reunion even though I desperately wanted to have a fun weekend with my friends.
When my parents asked if I wanted them to drive down from New York, I didn’t shoo them away. I said yes.
I texted my aunt and uncle in the area, and asked if my aunt could come sit in the hospital with me for an hour. This was one of the hardest asks to make- was I really going to ruin her Friday afternoon? What if she said no? And yet when she got to the hospital I began bawling with relief. I wasn’t alone. And being a mom who had taken her kids to the emergency room, she knew how to navigate; she kept my parents updated, coordinated with the hospital staff, and brought me snacks. I could let myself be taken care of.
I called my ex-boyfriend; who although he isn’t my partner, loves and supports me, and I let myself be supported.
In building my one joyous, beautiful life, this diagnosis has required me to evaluate every one of my identities. I am not the same employee, friend, partner, athlete, or daughter I was pre-diagnosis. I am slower, I require more support, and everyday I try to prioritize what I need.
Here is what I would argue, joy is more than birthdays and cupcakes. Would I choose for my joy to come from learning how to cope with a chronic illness? Certainly not. But it has led me to the conclusion that joy comes from connection; with myself and with others. Reaching out for connection is harder and more rewarding than buying cupcakes. Joy is asking for and letting yourself feel loved and supported…that is inherently brave. Joy is not sitting in the emergency room alone.
Questions for this week:
What’s one thing you are needing this week? Who is one person you could ask for help? (even if you could do it on your own).
How does joy and bravery sit together for you?
What’s one hard thing you did this week that you are proud of yourself for? Tell someone else. :)
