What it feels like sometimes to have a chronic illness.
This blog has always been a place of healing for me. You, dear readers, have contributed to creating this safe sanctuary with your comments and stories, sharing your hearts, your struggles and your fears. Vulnerability breeds vulnerability. But for these past few months, hitting the publish button on WordPress has been a terrifying idea for me. To share what has really been going on in my life comes with risk, mostly the fear that I will invite in pity and that no one would understand.
What has pushed me to finally tell my story here is my frustration over the last few months of the lack of personal stories around chronic illness, particularly young adults living with chronic illness. In other words, stories like mine.
As a lover of non-fiction and memoir, I have listened to, watched and read accounts of people’s chronic illness experiences, mostly about those who are living with and/or survived cancer. I turned to others’ stories of sickness to try to understand mine. I longed to find stories that helped me connect with someone else who might be going through/or have experienced similar challenges. I found some nuggets of comfort in their stories, points of relating, but I have since come to realize that every person’s story is unique, and so is mine, and it is one worth telling.
During this past summer, my health was relatively stable, and I started to feel like I was getting my life back and getting ME back. I was running again for the first time in years and I cannot tell you how good it felt to reclaim that. I felt normal again–hopeful. I ran 4.8 miles in a relay race and signed up for my first 10K. I spent the rest of my summer training for my 10K in September—the 10K that never happened.
Me over the summer when I was back to running and feeling strong and on top of the world.
For the past month, my chronic illness has flared because of a virus that I contracted. Over these past few weeks, I’ve been re-experiencing what it’s like to have a chronic illness rob me of big things like my identity and little things like cooking dinner. Anger and frustration have been building inside of me. I feel like I have control over nothing and it scares the hell out of me. While these emotions don’t always feel good, they’re fueling me to feel more empowered in this mess and not be afraid to use my voice to share my story and also advocate for myself in a healthcare system that downright just sucks.
Chronic illness can be a lonely journey. Throughout mine, I have often felt that no one could understand what I was experiencing, and so I isolated myself. Beyond my immediate family, only a handful of my close friends know about my illness. I coped by not talking about it. When you say things out loud it feels too real. I no longer want to stay silent.
Over the summer, I finished reading Natalie Goldberg’s latest memoir about her journey with cancer: “Let the Whole Thundering World Come Home.” In the preface, she writes “a writer has a second chance to digest experience.” For me, writing has always helped me make sense of the world, process what feels unexplainable and painful. But for the last nine months or so, I have been so immersed in my health that I no longer had the energy to digest my experience. It was easier to shut down and numb out. All my strength was poured into grad school, doctor’s appointments and medication changes. I fell into my default mode of pushing through. During that time, the pages of my writing notebook and journal sat mostly blank, except for some random entries about doctor’s visits or quotes that moved me. It wasn’t until May that I cracked open my notebook again while lounging on the beach listening to the constant calm of the sea and trying to make sense of the past year. It felt equally freeing and scary to put words to paper and face those difficult emotions.
The thing I wanted to write about, the thing that had become a constant presence in my life since August, I have been most afraid to write about. To write about anything else would have felt false, inauthentic, which is why you haven’t heard much from me in the last year on this blog.
There is a Zen proverb “let go or be dragged.” Writing about my illness has been part of my grieving process and has helped me accept what is and let go of what was. And yet I’m constantly being reminded that the grieving process is never linear, and I find myself these days revisiting the stages of grief that I thought I was done visiting.
Holding on to the past keeps me stuck in my suffering. Writing has always been my therapeutic release. Lately, I have been writing just for me, but now I feel called to share it because I hope my story may help others in their chronic illness journey, but also because selfishly I need to share it for my own healing.
This is the first picture I took of the regimen of pills I was first prescribed bc I’m weird like that and like to document things. :p This photo was taken in Sept. 2017. Since then, my medication has morphed into four different medications totaling close to 3,000 mg a day.
Every new diagnosis comes with grief—a loss of health, a loss of normalcy, frustration, anger, fear, anxiety, sadness. Just when my health reaches a period of stability, it seems something else is positioned in the wings, waiting to reveal itself. Chronic illness has the worst timing.
Barely a few weeks into my first year of grad school, I was diagnosed with Mycobacterium avium intracellulare, or MAI, a rare and serious lung infection. MAI is an atypical nontuberculosis germ that lives in the environment. It is not contagious. However, it is difficult to treat because the bacteria is slow-growing and thus it takes longer to eradicate. Treatment is further complicated if the infection has formed in the cavity of the lung, making it difficult for the medicine to reach the infection, and putting a patient at higher risk of permanent lung damage. It is a lifetime disease with a 40 percent reinfection rate, which is a high and sobering statistic. I, unfortunately, contracted the cavitary type. This also means that for the past year, I’ve been on a regimen of nearly 3,000 mg of antibiotics daily—three different oral medications and one inhaled. In addition, I take eight different supplements daily to counteract the effects of my drugs and my disease.
My MAI diagnosis in September 2017 marked my fourth confirmed lung disease at age 37. Living with this disease in addition to three previously diagnosed lung diseases, one of which is in remission, has been an exhausting and tumultuous journey that has turned my life and my family’s life upside down. Having lung disease often feels like having the flu—you lose your appetite, your muscle aches, your body feels weak and tired. And one of the most frustrating parts is that you never know when it’s going to strike, and you have to spend the weekend in bed.
Nurse Molly at the ready when I am not feeling well.
My health history is like a domino effect. Nothing lives in isolation. One disease breeds another disease breeds another disease. Between 2011 and 2017, I had a few periods where my health felt stable. But every day I lived in constant fear that I’d have a flare up or some new and rare illness would surface. That anxiety has never left me.
“You can feel the pain, but suffering is when you want it to be different, when you want to be a horse instead of a donkey, an éclair instead of a slice of bread. Suffering is when you want the pain to stop,” writes Natalie Goldberg in “Old Friend From Far Away,” a beloved book I often find myself returning to. …
I want to be the horse. …
I want to be the éclair. …