Why I’m creating spaces for folks with chronic illness and pain to find each other.

I remember every detail of that big, living room window. My couch cozied up to it. A hollow spot imprinted in the cushion where I sat almost every day for years. Doubling as my safe space and my short leash. After all my body had been through, my world got really small. Couch sized, you could say. 

Isolation & restriction became a fixture of my everyday life. From social butterfly to caged animal. 

I wasn't just lonely because I was alone all day. It became apparent that the people around me didn’t understand what it was like to live with the loss of autonomy. They didn’t know what it was like to not be able to drive anymore, or do basic things like go grocery shopping. 

People still expected me to operate at the same cadence I had before shit got bad. Which made me feel like I constantly had to prove that I was “sick enough” to those around me. 

Meanwhile, I was just trying not to whither away more than I already had. 

Something that experience taught me is that if someone doesn’t believe you, It is not your job to make them. If people are treating you like a charity case and not a human being, they might not be your people. 

Eventually those people fell away. And In hind sight, it was a massive gift because it made room for the ones who really saw me. I finally was giving energy to people who didn’t judge me, who gave me grace, who built me up, and who always believed me. 

Having a safety net completely changed the way related to my illness & trauma. I stopped hating my body so much and started learning how to listen to her. Even without a diagnosis, I started believing myself when I knew something was wrong. Slowly but surely, I began to enjoy life again, even when my world was still small.

The point is, I had people who I could be my full and honest self with. At the time I didn’t realize what an integral part of my healing this was. 

I didn’t have the language for this at the time, but I do now. 

Coregulation teaches us that being in the presence of a safe other, has the power to influence our own physiology. Research shows that proper coregulation can reduce cortisol levels, increase oxytocin, shift the nervous system out of survival, affect heart rhythms, breathing patterns, and reduce vulnerability to anxiety and depression. 

And your body does all of this without you having to think about it. 

I’m not saying that co-regulation can cure your chronic condition. I am saying that safe people can alter the way you relate to yourself. And that is the whole point. It’s not to get rid of your chronic condition, although I am in support of your relief, it's to develop a kinder relationship to what is happening to you. 

This is exactly why I’m creating spaces for young adults with chronic illness & pain to meet each other. Because I know how heavy all this can be to carry alone. I know that I was lucky to be caught when I fell. And I know that, unfortunately, that is a rare experience. 

I believe that community is medicine. Being believed, accepted, and held can change your whole life. And I don't need a research paper to prove it, because I lived it. 

If my story is resonating with you. If you are feeling deeply alone and lost, know that I see you. I believe you. And there is a place for you here. 

I want you to have the kind of people I was lucky enough to have. People who believe you. People who don't require an explanation. People who can laugh with you, grieve with you, and remind you that there is still a life here. 

Until next time, be gentle with yourself,

Abby