How to be sick...

We have so much information about how to "be well." I wanted to share the ways I strive, as a person with chronic Lyme Disease, to live a life that is fulfilling and full, if not always "well."

Some of us are sick.

Some of us have a chronic illness or an acute illness that requires constant care. Some of us are on our “health journeys” and may, at some point, get better. Others of us won’t. What unites us is we have symptoms, and we need to find a way to live with them. And not just live with them, but perhaps make a life from them.

1. WHO am I to tell YOU how to be sick?

My name is Tessa and I have experienced symptoms like headache, body pain, fatigue, nausea, anxiety, diarrhea, and more since I was five years old. I have come to understand that I was probably bit by a deer tick around this age and contracted Lyme Disease and Babesiosis. I have also struggled with Epstein-Barr Virus and other chronic viral infections.

Since testing positive for Lyme Disease at age 25…

I have spent much of my time and most of my money on treating and fighting these tick-borne infections. Have I made significant headway? Absolutely. Am I still quite sick? You bet. I am now 30. I am coming to accept that I am not really in control here. I don’t know whether I will be sick for the rest of my life, or whether I will continue to regain my strength and capacity bit by bit. Perhaps both will come to pass. In any case, I need to figure out how to live with the reality of my chronic illness.

2. Why am I here now?

I used to be a job coach. I worked in Disability Services supporting people like me who experienced barriers to employment due to some kind of health or life circumstances. I recognized in my clients the same thing I felt when I was at my sickest - that it’s really good to have a place to go where you are welcome, wanted, and can contribute. It’s even better if your gifts and skills can be recognized and valued. I no longer work as a job coach, but I hold that value close. Life has more meaning when you’re able to contribute and participate.

I have recently begun a crowd-funding campaign as I am no longer able to afford consistent treatment. It is difficult to ask for help, and I have been humbled and overwhelmed by the generous response. This newsletter springs from a desire to say thank you. Thank you to the people who have helped, understood, listened, and offered patience and support. Here: Please take what I have to offer. Use what I have learned. Keep what resonates, let go of what doesn’t. Let me give something back, and let my challenges not go to waste.

Embroidery by Tessa Permar

3. What’s gonna happen?

I’m going to share. My big topics include health and sickness, disability, sexuality, creativity, and movement. Some days I’ll share some low-impact exercises you can do on your couch or in bed. Other times I’ll write about Lyme Disease testing options. I’ll tell you about my treatments and what has helped (spoiler alert - they all have!). I’ll provide writing prompts. I might tell you about a recent date I went on and whether I disclosed my illness. I’ll talk about food, cause I love it, but I will NOT offer food or diet advice. I’m going to try to avoid advice altogether. That’s not really the point of this.

5. What IS the point?

Connection. Transparency. A good laugh once in a while. The thing about being sick is it keeps you hidden, whether you’re in a hospital room, your bedroom, or even the bathroom stall at work (where are my IBS people at). As someone with an invisible illness, I feel doubly hidden because, even when I am grocery shopping or at work, I don’t look sick. My closest friends and most of my family haven’t even seen me really sick. But I am, whether I show it or not. And I still have a need to participate in life and to tell my stories.

If you are sick, I hope this brings some comfort. I hope this feels like a night out in velvet spilling secrets over mocktails. If you aren’t sick, that’s good! You will be at some point, be it for a day or many, and I promise it will be ok. Humans are so resilient. We are mostly water! We figure out how to fill the container we have. Whether you are sick, or going through something, or living your best life, I hope this newsletter meets you where you are at.

Until next time…

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