Life with an invisible illness presents many challenges. For me, one of the biggest challenges is an extreme sense of isolation.
At 19, I was diagnosed with psoriatic arthritis. At a time when people assumed I was vibrant, full of energy, and active, I was actually living with mind-numbing pain in my bones. Completing ordinary tasks was difficult, if not impossible. It wasn't a matter of struggling to keep up with my peers; most of the time, I couldn't participate at all.
On a scale of 1 to 10, there were years when my pain was at 15. But from the perspective of people who saw me from the outside, they would never know. I was a young woman with a big smile and a bright personality. People would say, "Why are you limping?" or "How come you're so tired all the time?" The distinction between how I felt and how I looked created an overall sense of separateness between me and other people, which made developing close relationships really tough.
For years, I lived in fear of being gaslit or shot down; disbelieved and misunderstood. Additionally, I didn’t want anyone’s pity or for people to simply see me as "the sick girl." Adding fuel to the fire were medical experiences, early on, with doctors who didn't have a supportive bedside manner or lead with empathy.
Many chronic illnesses have historically been shrouded in mystery or stigma. According to the CDC, 6 in 10 Americans have a chronic illness today — but many people don't talk about it. More understanding and awareness is needed.
I felt so alone.
Because of this, I shut people out. I retreated further into myself, simply trying to make it to the other side of pain and suffering.
As I focused inward, I started to work on self-acceptance. I began with my own relationships to my illness, my body, and my identity, asking myself, What do I know about myself that has nothing to do with being sick? How can I have more compassion for my body in a way that helps me move forward? And what do I truly want my life to look like?
To get more in tune with my thoughts, emotions, and values, I developed a consistent journaling and meditation practice. After some time, I realized there was only so much I could do by myself. So I sought out a great therapist and a medical team to support me in my growth.
Self-acceptance begins as an individual journey. You have to do that messy inner work first to get to the magic of self-discovery. But you shouldn’t be stuck there alone, paused at the discovery stage.
So many of us with chronic illness think our journey is meant to be solo. But the breakthrough — the next level of growth — happens when we bring someone else into the journey.
All that inner work gave me the confidence to go out into the world and show up as a fuller version of myself, with less fear. Getting more connected to my values made me more confident in seeking out people who embodied compassion, care, and hope for healing.
I met a few friends from different communities who supported and accepted me. Their acceptance and support deepened my own self-acceptance and self-love. After finding a few people I could trust, I realized there were other options besides shutting down and hiding behind my old emotional walls.
After you figure out your personal values and goals, you deserve to find people who can help you make those dreams a reality. For me, it was easy to find people who were sick, but it was tough to find a community centered on hope for healing and thriving. That’s why I created the Chronicon community.
Being part of a trusted community allows you to go from just surviving to learning how to thrive. The other day, a member who also struggles with joint pain spoke about giving herself grace when she didn’t have the energy to exercise and allowing herself to rest. Her self-compassion reminded me to also be kinder to myself during a high-pain day. And a recent community conversation about coping with our inner critics helped me better navigate the mental strain and emotional burden of living with chronic pain. Through the discussion, I was reminded that a strong spiritual practice or listening to an uplifting podcast are tangible ways to help support my body and mind through difficult days.
Community offers irreplaceable support and encouragement that you can’t get by yourself. There’s nothing like having others to act as a mirror for the hopes you have for yourself, especially when your pain keeps you from seeing yourself clearly. And when you're feeling dragged down by darkness, others who get what you’re going through can help light the way.
Living the life of your dreams is not meant to be done alone. Find your people, and go there.
This story is part of Survivor's Guide, a series on navigating the impact of psoriasis through beauty and self-care.
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