Why I Started Writing on Substack

Sharing my story so others feel less alone in their own difficult seasons

I have always been a writer. In fact, I write in my head—in full sentences—before I put it to paper (or laptop). I have no idea if this is common among other writers. Maybe it’s a sign of serious psychopathic tendencies—like that of a serial killer. Cue the Netflix documentary where my neighbors describe me as friendly, someone who loves dogs and was always giving away bouquets of roses from my yard, having no idea my dark sense of humor wasn’t just a part of my “charm.”

My life has become incredibly small, since being diagnosed with MCAS. When you have a serious illness, your life comes to a complete stop. Even though it happens almost overnight, it takes a long time to adjust to the fact that your life is unrecognizable. I was a high-achieving, highly productive person who had a career I loved, doing crisis communication for law enforcement across the state of California. I walked almost three miles a day, lifted weights three times a week, loved to cook, entertain and decorate my home. And now I could barely function.

In the beginning of this illness, I had almost 100 symptoms at once, which affected every part of my body. I struggled to walk, eat, sleep, think, go the bathroom and so much more (eating and sleeping are still huge issues). Not to mention trying to manage the three to five medical appointments per week and the long list of medications and supplements. You’re just trying to survive the brutally long days—you have no room for anything else, much less making sense of what is happening to you.

My somatic therapist has been encouraging me to write for a while now, but I couldn’t. I would just draw a blank, which was upsetting for someone who has written their entire life. And I didn’t want to think about this more than I already was, which was constantly. I was worried writing would reinforce the symptoms, causing me to feel worse (I’m still worried about that).

But throughout this illness, I’ve written in my head. Whether it’s a conversation I envision having with someone or trying to make sense of what I’m going through, it hasn’t stopped—it’s only gotten worse. Which told me there were things that needed to come out. My therapist agreed.

Before my diagnosis, I knew whatever I had was serious. Not only because of my long list of symptoms, but because the several doctors I saw had no idea what was wrong. One day while sitting in my backyard, I asked God, “If you’re going to allow me to be put through something horrible, please don’t waste it. Use it for good.” I didn’t know anything about Substack when I started mine a little over a month ago. I could have kept a private journal, but I wanted to help people. I knew of others who went to hospitals all over the country for years until they were finally given a diagnosis of MCAS. Who are on medications that make them feel as bad as when they’re off them, or who are told that their illness will eventually turn to cancer. And this is from the top doctors at the top hospitals in the country.

I chose a medical team, comprised of doctors (MDs) and other practitioners, who are functionally and somatically trained. Who are on the cutting edge of treatment for chronic and mysterious illnesses. Who see the root cause of these conditions as a dysregulated limbic and nervous system and design their protocols to that effect. And within three months of treatment, I had a 75 percent decrease in symptoms.

In the last 20 months, I have learned so much not only about this illness, but about how I got here (I swear, my four-year college degree took less time and effort than this). And I don’t want to keep that knowledge to myself. I don’t want to see anyone suffer like I’ve been, and if making my writing public (as difficult and vulnerable as that is), helps someone, then it’s worth it. I would have given anything to come across someone’s writing who had gone through what I’m going through now. Who talked about all that comes with a health condition like this—the isolation, the loneliness, the fear, the guilt, the pain, the hopelessness, the exhaustion, the boredom, the restlessness, the changes in relationships, the feeling like everyone has left you behind, the feeling like a burden, the feeling like you have no purpose, the feeling like your body is a prison, the feeling like you really could lose your mind, and like you’re at the bottom of a deep, dark hole and you can’t see the way out.

My therapist, who is a part of my medical team, told me several months ago, people usually give up by now. Give up? What does that look like? I would love to give up. This is relentless. But if that means I’m going to be at home, on the couch, dealing with an onslaught of symptoms for the rest of my life, then no thanks. I’m told the grit I’ve always had is one of the things that will get me to the other side. I hope so.

I don’t have all the answers. I wish I did. For now, I’m going to write and see if it’s part of that grit that will get me through this. And God willing, take others with me.

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me’.” Matthew 25:40