How Substack Changed My Life in Just Two Months

I have a love-hate relationship with social media. I’m old enough to remember when Facebook and Twitter (now X) launched. Since I was in marketing and public relations, I was an early adopter of both platforms. At the time, the main point of Facebook was to keep up with friends and family who you didn’t get to see often, and Twitter was a great place to make media connections. Then Instagram came along, and it was all about beautiful and creative imagery, which made it feel like a wonderful escape.

Then it changed. I’m sure it was a slow decline, but it seemed like it was overnight. Friends who were on the verge of divorce, posting long proclamations of their undying love for each other (this is when I started calling Facebook, Fakebook). People documenting every moment of their lives—meals, errands, school runs, vacations—and making them appear as shiny as possible. Then came the ads and suggested accounts you should follow, clogging up your feed to where you rarely saw posts from the people you actually cared about. And then the birth of influencers. While I love that anyone can start a business from their phone and share their gifts with the world while supporting their family, I hate what the influencer industry has done, especially to young people who are seeing a rise in anxiety and depression from online bullying and comparison culture. I’m not even going to get into the trolls, the fear-based news (what I call grief porn) and the political division that plays out across these platforms.

Before starting my Substack two months ago, I had heard of the platform but had never looked at it. And then I started seeing doctors, practitioners, authors and interior designers announce on Instagram that they had a Substack. This was around the time my medical team was encouraging me to write, and instead of keeping a private journal, I wanted to make my writing public to help others. So, I joined, not knowing anything about it, hoping for the best.

And so far, it has been an incredible experience. The feedback and support I’ve received has been beyond anything I could have imagined. I have heard from others suffering from chronic illness (or who have recovered). I’ve also heard from doctors, nurses, functional practitioners, therapists and more. While these are online interactions, which doesn’t hold a candle to in-person connection, I feel less alone in my experience and so much more heard, seen and understood.

This platform has also given me a sense of purpose, which I desperately needed. When your entire life stops due to an illness, and you can no longer work or be productive in any part of your life, you lose your identity and your sense of place in the world. You feel completely useless to the point that if you died, you don’t think it would matter. While you’re stuck at home, feeling powerless, you’re watching everyone live their lives without you. But seeing how my writing is affecting people, has given me some of my identity back. It has also given me something to focus on, besides my own life, which has become very small and limited.

During an appointment with my somatic therapist a couple weeks ago, she commented that she could see a huge difference in me—my complexion, my energy, my voice, my language. She wholeheartedly believes it’s because I’m writing.

Substack is filled with compassionate people who have no desire to portray how amazing their lives are, and instead, write honestly about their experiences while encouraging others. I never leave Substack feeling worse about my illness or my life; I leave feeling cared for and supported. Many have described this platform as an intimate corner of the interwebs filled with people who want nothing but the best for you. I couldn’t agree more.

Here are just a few of the many comments I’ve received on my articles, from the 150 subscribers (almost all strangers) I’ve accrued in just 60 days.

“You are a great example of self-trust and faith. Thank you for writing this article.” — Melissa

“This really moved me. You rock! I’m sending so much love and white light to you.” — Annie

“Thanks for choosing to be vulnerable and open, thanks for putting words to the despair, for naming those things I haven’t been able to, and for making me feel less lonely. I don’t know you, but I do. I hug you.” — Rayen

“You have definitely been through a lot. and I’m sure you have learned a lot along the way. Kudos for you for keeping going where others would’ve just given up. You’ve got something special inside of you. You are going to be a great inspiration for others to know that they could go well beyond what others have deemed impossible.” — Rebuilding Life

“This was so beautifully human. The way you wrote about loss, fear, exhaustion, and still somehow holding onto that small part of yourself that keeps writing really moved me. I’m genuinely glad you decided to share this. Thank you. I think your words are going to make a lot of people feel less alone. :) Sending so much love for you!” — Raihan

“The decision to make this public instead of keeping it private feels significant. It turns something deeply personal into something relational...and that intention to help others through your experience comes through strongly. It takes a lot of courage to let people into something this raw, especially when you’re still in the middle of it. And that honesty is exactly what makes it feel so impactful and real. Thank you so much for sharing! I subbed to read more!” — Maria

“What I saw in your article was not perfection or someone trying to be “enlightened.” I saw moments of real centeredness. And I think this is what so many people miss while seeking healing, ascension, or some perfected version of themselves… that doesn’t exist. They end up separating from their own humanity. But true power isn’t becoming less human. It’s being able to stay connected to yourself… while life is still life. That’s what I felt in your writing. A woman navigating real experiences… but from a grounded, centered place instead of collapsing into them. People don’t realize they are already light. They don’t need to seek to be something else. The real shift is learning how to return to center… hold that place internally… while moving through the human experience itself. So thank you for writing that article.” — Natalie

“I went through all of this myself with my own chronic illness. Nearly 13 years later it is still hard, and I am still searching for answers. But, it has broken me open in a way nothing else could have. I have grown and evolved in ways that I am profoundly grateful for, and that have allowed me to step into who I really am. I can tell you are on the same journey. Keep going and have faith in the fire that burns away everything that isn’t true to you.” — Katie

“Ramona, God bless you! Your heart is beautiful. Thank you. I have a different diagnosis but also struggled for decades. I lost track. Yesterday, I actually connected for the first time with someone who totally understood! I cried when I read your piece today. I’m older now and my greatest dilemma is finding a ride from this small town to the “big city.” Driving in major traffic isn’t easy anymore nor wise for me. Just know you have set a stage. Allowing others to hear and to share. It may not pay well, but it opens eyes and hearts to hope.” — Blessings. M.

“First and foremost, you are enough, and perfectly imperfect just the way you are. Thank you for being a brave and authentic writer. I have a similar journey. First illness diagnosed 20+ years ago when only two places in the country diagnosed it (Dysautonomia - POTS). Over the years, several other diagnoses. My point - much compassion. I understand the roller coaster of doctors, attempts at healing and finding your current state of living. I’m always here to listen or help. Feel free to reach out. And remember, when it comes to writing your Substack, however you show up is perfect. We will be here to listen.” — Alex Lynn

Thank you, my fellow Substackers. I am so grateful that you take the time to write such meaningful and thoughtful comments. You have no idea how much you’re helping me. And in turn, I hope I’m doing the same for you.

“May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had.” Romans 15:5