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The Mental & Emotional Side Of Crohn's Disease
It has taken me two years to publish this post. In some form or another, it has sat in my Drafts folder for a full two years.
It’s a bit of a tough topic — the mental and emotional side of Crohn’s — and is certainly a vulnerable one. It has been difficult for me to put these feelings into words, in part because they’re so personal, and in much larger part because I feared criticism over how I was feeling. I know firsthand (ohhhh do I know firsthand!) how nasty the internet can be, and while I can normally blink and dismiss “the haters,” this topic was (and remains) one I’m particularly sensitive and defensive about. Maybe just keep that in mind as you’re reading (with an open mind, I hope).
Ultimately, I’ve decided to share my feelings, because to ignore the emotional aspects of having a chronic illness would be neglecting a huge part of what a disease like Crohn’s encompasses.
So today, continuing to honor Crohn’s & Colitis Awareness Week, I’m sharing my emotional and mental journey through my worst Crohn’s flare-ups.
I spent many months in 2013 and 2014 feeling deeply depressed. I don’t remember it starting or coming on suddenly. I was sick and getting sicker, and in the summer of 2013 my Crohn’s disease flare-up had gotten so bad that I had to go on temporary medical leave from my job. During that time, my mental health suffered.
I never sought help, and I pushed away my loved ones. I refused to see a therapist because I didn’t want to see more “doctors.” I didn’t want to talk about it (the past, present, or future) with someone I’d never even met, I envisioned myself just crying the whole time, and I believed that my depression (which is how I refer to my state during that time — I never saw someone to get a clinical diagnosis) would be solved as soon as I got healthy.
But I also believed I would never get healthy again.
I remember — once I was starting to regain my health — returning home from a work trip to L.A. As we were nearing our landing spot at JFK, I took a deep breath and thought, “I am glad our plane didn’t crash today.” It’s an awful thing to even think about when you’re cruising at 35,000 feet. But nearly every other time I had gotten on a plane that year, I secretly wished it would go down and put me out of my misery. I hated thinking those thoughts, but I couldn’t help it. I was so profoundly unhappy, and if I couldn’t change my situation myself, maybe a bad case of turbulence or a flock of high-flying pigeons could help me out.
Now, to be clear, I was never suicidal. I never wanted to take my own life. Ever. (Seriously, Mom. I promise.) I just didn’t want to exist anymore. I was in such a state of constant pain and unhappiness from this disease that I did not want to be around anymore.
It was on that plane that night that I realized I had reached the proverbial light at the end of the tunnel and was ready to move past that seemingly never-ending stretch of darkness I had gone through to get to that point.
People talk about the extensive symptoms and side effects of Crohn’s disease — diarrhea, pain, cramping, fatigue, fevers, joint pain — and they’ll usually tack “depression” on there at the end, like it’s something a few Tylenol will help alleviate every few hours. But it’s rarely elaborated upon, and I didn’t fully understand it until I was in it.
For 25 years, I was the happiest person I knew. My hands were in a constant state of “Jazz” and my smile was practically plastered on. I saw the bright side of everything, and my glass wasn’t just half full, it was overflowing (but didn’t make a mess, like all those smoothies on Instagram).
I never thought I would be someone who was depressed. It didn’t even cross my mind.
I had a great job! Lots of friends! A super great boyfriend! A cool apartment in New York City! A pet giraffe!
But I also have Crohn’s. And when this one particular flare-up beat me down so unrelentingly for months, it took a big piece of my soul right down the toilet with it (#poetry). After two decades with this disease, I knew to expect the bloody bathroom visits and the multiple nightly costume changes on account of night sweats, but I did not expect my spirit to quit on me, too.
So this particular flare-up was bad. If you’ve been around for a while, you know that. It kicked my ass and rocked my world and tore me apart. It was so much more than physical.
During those dark days, I completely lost my identity, which was really hard. I was no longer Ali the Editor in Chief (I had unwillingly gone on medical leave from my job), I wasn’t Auntie Ali (I had to miss Tyler’s first birthday party because I was too sick to make the trip to Boston, and when we FaceTimed, I often had to hang up to run for the bathroom), and I certainly wasn’t Ali On The Run (running? I could barely walk, let alone leave the apartment). I felt so lost, so sad, and so completely empty.
I spent every day at home, alone, on an awful, sweaty, leather couch. I loathed that couch. I was in physical and mental pain, but at some point the mental sadness became something more than sadness. The mere sight of the couch every morning made me cry. Eventually I started experiencing panic attacks just thinking about spending the entire day sitting on the couch. Brian would come home from work, and I would be in the exact same spot I was in when he had left 12 hours prior.
I isolated myself a lot during those times. I didn’t want to ask for help, but also wouldn’t let my friends come visit because I didn’t want them to see me so sick, and didn’t want to spend their entire visits in the bathroom.
I felt guilty. Like I shouldn’t be burdening people with my problems, my pain. My coworker-turned-friend-turned-neighbor-turned-BFF-turned-bridesmaid, Michael, would pick up my prescriptions from Duane Reade and would drop them off at my apartment, but I would rarely let her stay and visit.
There were days I thought I would never stop crying, and there were days I felt nothing at all. I would just sit for hours, watching bad TV and waiting for the day to end. Our apartment has great views of the East River and gets tons of natural sunlight — and the first thing I did every morning was close the shades. I wasn’t interested.
The week I was supposed to go to Hawaii with Brian knocked me from “really bad” to “rock bottom.” We were supposed to go to Hawaii for a friend’s wedding, but I was too sick to go. I insisted he still go, and I went to New Hampshire so my parents could take care of me. I couldn’t take care of myself anymore. I was finally waving my white flag (I picture it being made of white glitter and snowflakes) and letting my mom make me grilled cheese sandwiches.
At one point while I was in New Hampshire, my mom said, “At least you’re alive.” My response? “Yeah, but I don’t want to be.”
I will never forget the look on her face when those words so dryly came out of my mouth. It was heartbreaking. I was being truthful without thinking about how my brutal honesty was affecting my loved ones who only wanted to help.
When my parents brought me to the airport to return to New York City (to see a new doctor!), I wasn’t any healthier. They hadn’t been able to fix me, and that was sad for all of us. I remember leaving them at the airport, sobbing as I walked toward my gate with my suitcase and a bag full of gluten-free snacks (a failed experiment).
Back in New York, I stopped opening my medical bills. Since I was on medical leave, I wasn’t getting paid and couldn’t pay my bills. Of course, hiding them didn’t make the debt collectors stop calling. It was a very out-of-character move for someone who always used to pay in full, on time, every time. But I couldn’t look at the mounting pile of dollar signs.
I finally stuffed the entire stack of half-opened bills into a manila envelope and sent them to my former accountant Dad with a note: “Can you help me figure these out?”
A few days later, he sent me a spreadsheet, telling me exactly what each bill was for, which ones needed to be paid immediately, which could potentially be negotiated, and which I could keep hiding from (thanks, to this day, Mount Sinai Infusion Center, for completely screwing me over).
Meanwhile, I felt my relationship with Brian slipping away. Every single day I expected him to come home from work and break up with me — and I wouldn’t have blamed him.
Dating someone who is sick is not easy. Dating someone who is sick and has given up — who has no fight left in her — is even harder. (If you missed Brian’s take on all this from earlier in the week, check it out when you’re done here.)
Every day that I woke up and didn’t feel better was another day wasted. I felt kicked when I was down, over and over and over. I had no hope. My heart felt shattered. What was I living for? I missed my family, I didn’t want to see my friends, my boyfriend probably didn’t want to be around me, and I couldn’t even think about running, spinning, or yoga. My job was on hold, along with my income — the thing that helped me partially afford this expensive disease.
Some days I was sad, others I felt angry. Most days, I felt nothing at all. I didn’t respond to emails, I didn’t shower, and I definitely didn’t feel like “fighting.”
Everyone kept telling me to “keep fighting!” and it would make me irrationally angry.
I wasn’t fighting. I was sitting around, unshowered, covered in fever-induced sweat. I wasn’t trying to leave the apartment. I wasn’t making myself nutritious meals. I was barely surviving. I was letting Crohn’s win, and I had no desire to “fight.”
And despite their urging, I never sought professional help. I only talked to a few select people most days, and I told them every day that I “just wanted to disappear.” I rarely elaborated, but they listened and empathized. They were all I thought I needed.
In retrospect, it wasn’t fair to unload such heavy feelings onto them. I should have talked to someone trained to respond and help as needed. I should have invested time and money in someone who could adequately handle what I was going through.
I was so defensive, though. Beyond my “why bother?” mentality were my excuses and my strong belief that if I ever got healthy again, I wouldn’t be depressed anymore.
While that did end up being true, for the most part, having someone to talk to in the interim probably wouldn’t have made my situation worse.
Plus, I insisted, I couldn’t leave the apartment to go talk to someone, and I couldn’t afford the cost of therapy since I didn’t have any money coming in. I had every excuse in the world, and I was set on surviving on my own.
There was no magic trick that got me out of my deep funk.
Eventually, spring and summer turned to fall.
I had started a new medication and was getting Iron and Albumin infusions twice a week. That combination worked just enough to get me off the couch. I started acknowledging little victories — getting off the couch, showering, getting dressed, walking to the elevator, taking the elevator to the lobby, walking outside — and eventually basking in them and celebrating them.
Walks to Central Park turned into cab rides back to work, which eventually turned into subway rides to work. One day a walk in the park turned into a .5-mile run in the park. I think I sweat out 85% of my emotions in those seven minutes (yes, seven minutes).
I returned to my people, and most of them were still there, ready and willing to have “The Old Ali” back. Some of them weren’t, honestly. That’s life, though.
As I got back to my routine — less time in the bathroom, more time outside, socializing, and making my life count again — I knew the worst had passed, at least for a while.
I got to be Editor Ali, Auntie Ali, and Ali On The Run again.
My mental and emotional battles through Crohn’s disease broke me down in a way I had never experienced. I had dealt with the stomach stuff, but never the “other” side effects.
Now I know that, should I get sick again, this might all come back.
And that’s OK.
I know it’s OK to ask for help, and I know it’s OK if it takes a little time to get to that point.
I know I can get through it — me and my support squad.
I don’t have a beautiful kicker to end this post. Just reassurance that you’re not alone.
When I was feeling this way, Hyperbole and a Half writer Allie Brosh gave me something to cling to; something, finally, that kind of explained how I was feeling. These posts (part one, part two) were the most relatable things I found.
Oh, last last thing…
When I was deeply sick and deeply sad, you — the people who read and support me and this blog — helped more than you will ever know. The constant love and support from my internet family kept me going on so many occasions. I don’t know how to adequately thank you for that. So, two years too late: THANK YOU. From the bottom of my most grateful heart.