A Story About Living With Chronic Illness

Lately, it’s hard for me to remember the last time I felt good. A time when I had energy and didn’t wake up fatigued. A time when I got excited about my next meal, rather than dreading it because I am pretty sure it’ll make me sick. And I really don’t remember going for more than a week without having a flareup and being in excruciating pain. I’m always waiting for the pain to come. Always. I’m beginning to forget the last time someone asked me how I am and I replied “I’m good” — and actually meant it. These days, my “I’m good” really means I’m awful.

I’ve been living with chronic illness since 2011 when I was diagnosed with Interstitial Cystitis (IC, a painful bladder auto-immune condition) and anxiety/insomnia/depression. But for some reason my overall health has gotten much worse in my late twenties. I have multiple conditions/disorders: IC, Irritable Bowel Syndrome (IBS)/leaky gut, a repetitive stress injury, and anxiety coupled with depression. I often think that I’m lucky: it could be worse, at least I don’t have cancer. But when I’m lying on my bed in a fetal position crying hysterically from the stabbing pain, when I’m lying on the couch for days staring up at the ceiling as the darkness consumes me, sometimes it feels like I’m dying a slow, painful death. It may not be cancer, but it’s fucking horrible.

The turning point (or rather, breaking point) for me happened this October when I was at the 2017 SACNAS conference in Salt Lake City, Utah. I’ve worked at the nonprofit organization SACNAS for the past three years and this was my third — and last — SACNAS conference. We arrived Monday and the conference began that Thursday. Wednesday was pre-con where my work really began. Despite feeling anxious all day, I pushed through.

That night, the anxiety was on high and I had trouble falling asleep, even after taking Trazodone, an anti-depressant used as a sleeping aid. No sooner did my head hit the pillow when I jolted up wide awake, feeling like I hadn’t slept at all. It was 3am and I was having one of the worst panic attacks I ever remember having. The night was a blur. I remember trying to call crisis hotlines, but wasn’t able to get through, so I called the hotel front desk for help. The next thing I know, the paramedics are in my room trying to talk me down. I was scared, confused and desperate. I had somehow convinced myself that I needed to check into a mental health clinic at that very moment. One of the paramedics gave me two choices: I could stay here and let the anxiety pass, or I could go with them. I knew I didn’t want to be alone. I was in crisis, in fight-or-flight. I couldn’t be alone. Not for the reason you’re probably thinking, though. I’ve had (and still have) suicidal thoughts, but never would actually harm myself. Then again, can anyone with a mental health disorder be sure of that? I don’t know.

Everything was a blur. Suddenly, I’m being strapped into the stretcher and rolled down the hallway, through the elevator, out the hotel doors and then into the back of the ambulance. By this time, it was 4am. I didn’t remember where they said they were taking me. I assumed it was a mental health clinic. I didn’t care where. For the first time in a long time, I had hope.

The hope I so desperately clung to didn’t last long. I ended up spending most of the morning sitting by myself in a small room with a curtain drawn for privacy at the University of Utah ER. The nurse who took my vitals continued working as I sat there sobbing. She was a robot with zero compassion, not a human being. I waited patiently, listening to the other nurses in front of me laugh and joke with each other. I thought that someone would come to talk to me. Anybody. A therapist. A nurse. A human. I didn’t care. No one came and I couldn’t wait anymore. I finally stormed out and took a Lyft back to the hotel. Hope no longer clung to my side. Only anger, frustration, disappointment, and deep despair. Once I got there, I showered, got dressed, and ate — somehow. I was still shaking and a nervous wreck, but it was the first day of the conference and I had important work to do. People were depending on me. So I made it through the day — somehow.

Friday came, and I was miraculously managing to hold myself together, that is until the unexpected happened. I walked into the VIP lounge to find my colleague and one of our Native American speakers there with his wife. The Native man (out of respect, I am leaving his name unmentioned) began sharing who he is with us. He told us a story of having to sleep in the forest for three months until housing opened up on campus and he had a place to live. He told us how he’s spiritual and spoke so passionately with such conviction about the importance of Natives like him going back to help his people.

As he spoke, something shifted inside of me. I began to cry, not tears of sorrow, but tears of release, of letting go, of just being.

In that moment, I finally felt as though I could be myself, that I could truly be vulnerable, be my whole, authentic self.

Everything that I’ve learned at SACNAS, everything that the conference embodies — diversity is our strength, bring your whole selves to your work , embrace who you are — had manifested itself in that very moment. I genuinely understood what all of this meant because I was feeling it.

Needless to say, after this special encounter, I totally lost it. I was a mess. I left the conference for a few hours to be by myself. The Native American had opened my heart with his sentiments and his energy, and this triggered something deep inside me. I needed to calm down, to center myself before returning to work.

At the time, I was extremely upset and depressed about the multiple breakdowns and flareups I had at the conference. “This wasn’t how I was supposed to experience my last conference,” I thought to myself. “I missed so much. I miss out on LIFE because of my chronic illness!” But as I reflect on what happened, I’m strangely grateful for the breakdowns and debilitating anxiety. What happened was a gift, especially because it happened in such a safe and supportive environment that is the SACNAS familia. I connected with my colleagues on a deeper level because of the anxiety, and with one individual in particular who is now a lifelong friend. I was able to practice being vulnerable and talking about what I was going through. As I opened up, I was met with compassion and warm embraces. I was accepted in that moment exactly as I am. I felt free.

What happened to me at the conference woke me up. Have things been better for me since hitting rock bottom? Yes and No. I’ve resigned from my job in order to focus on my recovery. My last day at SACNAS is December 1, and I’ve been struggling to wrap up work amidst painful IBS/IC flare-ups and mood swings as I wean myself off of Prozac. Two days after I leave my job, I will be checking into True North Health Center where I will stay until December 18. Then I will return in February once I’m completely off my medication in order to participate in a 21-day water fast.

I’m absolutely frightened of the uncertainty and the unknown of my future. I keep telling myself the worst is yet to come. I’ve only reduced from 30mg to 20mg, and I‘m already experiencing all of the withdrawal symptoms that are listed when you google “weaning yourself off Prozac symptoms.” I still have a brutal road ahead of me, but I’m hopeful that I will get better. I have to.

I’ve suffered in silence for far too long, which is why I’m writing this post. If you’re reading this right now, know you aren’t alone. You aren’t crazy. There’s nothing wrong with you, and everything really will be okay — even if it seems like it won’t be.

I know I’m strong and getting stronger every day. When I’m in that dark place and I feel like giving up, I recall the last time I was here, and the last time before that, and so on. I’ve climbed one fucking mountain after another and I’ve fallen off one mountain after another, and I’ve always made my way back out of the darkness and into the light. So can you. So will you.

If you are reading this, please reach out for help and support. Living with chronic illness can feel so isolating, lonely, terrifying and hopeless. Surrounding yourself with those who are going through similar things you face is crucial.

Remember, you are loved. ❤ No Mud, No Lotus.