Living with hEDS, POTS, and MCAS: What I’ve Learned About Resilience
Growing up, I got hurt and sick a lot. Sprained ankles, headaches, and tummy aches were not an uncommon occurrence. I would wake up sick most mornings before school and sleep for hours when I got home without feeling rested. Accidents and injuries that should have been an icepack turned into an ER visit and sometimes, surgery. Nonetheless, I got written off as clumsy, anxious, and dramatic. Fragmented visits with specialists who weren’t seeing the whole picture, which was whole body and whole system wide, couldn’t connect the dots constellation of symptoms and didn’t address what was actually going on. This messaging significantly impacted my trust in my body and downplayed the severity of the pain I was feeling. But what I was experiencing wasn’t normal, and I wasn’t being dramatic.
It took 20 years to get an accurate diagnosis and treatment that actually helped. In college, I suddenly found myself navigating a cluster of chronic illness diagnoses all at once: Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Polycystic Ovary Syndrome (PCOS). To be honest—it was really overwhelming. Even my family was like, “Are you sure? That is so many diagnoses at once”. I had so much new information about why I was experiencing the things I was - it was starting to make sense. Getting diagnosed was simultaneously the most terrifying and relieving experience I’ve ever had. I wasn’t being dramatic.
What Resilience Looks Like with Chronic Illness
I was experiencing unmanaged chronic illness symptoms my whole life, and that led to really intense burnout. When I’m burnt out, I kinda feel like how Winnie looks when she sploots on the porch. Flop.
Now that I know my body works a little differently, I know how to manage my symptoms effectively. These are some of the ways I remain resilient with chronic illness:
Remember: Rest is Radical.
The world doesn’t encourage us slowing down. Even traditionally healthy people are burning out to keep up with the demands of work, school, social life, or all of the above. Add chronic illness into the mix? Of course I felt like crap.
I am able to be so much more present and engaged when I’ve taken care of my basic needs. This includes sleeping enough, eating enough food that works for my digestive system, and moving my body in ways that are joyful and accessible, just to name a few things. I’ve also found that meditating is such a great resource for regulating my nervous system and getting in touch with what is actually happening, rather than the story I’ve been telling myself about what is happening.
I’ve gotten the messaging over and over that prioritizing these things over work or school is not the right thing to do, or it isn’t professional. My embodied experience is that I’m my most vibrant self when I can. It is also important to say that life factors including socio-economic status and race make taking care of yourself easier or harder, and that health and social identity is not separate.
Pace Yourself
My body is a little different than everyone else’s, and that means in some ways I need a different way of going about the world. My connective tissue disorder makes me feel fatigued quickly, and therefore it is helpful for me to accommodate my life. This includes intermittently using a handicapped parking pass, sitting down a little more, and doing things virtually when possible. It doesn’t have to be all or nothing - there is always a way to make something doable for however I am in that moment.
I’ve always been a perfectionist, and someone who feels like they need to do things 110%. This even shows up in my yoga practice. I’ve learned that joyful movement that doesn’t burn me out does not include handstands and running three times a week. I’ve come to terms with that. Slower forms of yoga with lots of props and rest sprinkled throughout makes my body feel strong and capable, which is the whole point anyway. Effort, like sweating and getting my heart rate through the roof, is not a reflection of the impact movement has on my body. Building this trust that my body will communicate with me has been such an empowering experience.
Honoring Joy
There are a lot of hard days when you’re navigating chronic illness. There are also a lot of good days and joy, and we are allowed to soak it up. When I notice when joy arises, I do my best to allow to to be there in its fullness. Sometimes, I also notice guilt or shame arise, and let that be there too.
Mindfulness is also a core tenet of how I find joy. It can come and pass, and I know it will make its way back to me again sometime soon. Oddly enough, sitting on a cushion and thinking about the nature of existence kind of helped me get through the first hard part of my diagnosis. Don’t get me wrong, when I first started meditating, I hated it. Everything hurt and my brain wouldn’t stop thinking. Little did I know, that was exactly what was meant to happen. Softening into that helped me begin to make sense of my experience, and joy arose.
Joy can be really big, like a concert, or small like a cup of tea. So whenever I’m snuggling with Winnie or connecting with a close friend, I can let joy shine through without gripping onto it.
All in all…
This journey is at the heart of my coaching practice, too. Together, we look at what behaviors, boundaries, and patterns will truly support the life you want to live. And because I’m navigating hEDS, POTS, and MCAS right alongside you, I know firsthand how important it is to build in rest and joy every step of the way.
A Note to Anyone Who’s Struggling
If you’re in the middle of a diagnosis journey—or just feeling worn down by the daily demands of living in a body that doesn’t always cooperate—I see you. You are not alone.
Resilience isn’t about powering through or pretending everything is okay. It’s about learning how to care for yourself, creating moments of ease in the midst of challenge, and finding joy even in unexpected places.
I’ve got you. Let’s do this thing—together.