What chronic illness actually looks like.

My weekend wasn’t what I had planned.

This past week, I was in New Hampshire for two days, on a panel, and afterwards we were out in a dahlia field under the lights. Friday I worked and caught up from being away, and by early evening I was checked into a hospital, for symptoms I hadn’t counted as much, which is how a lot of us learn to live with this. Chad is the one who pushed me to call my team.

I spent 30 hours there. For those of you who don’t know, I have a third brain tumor that we monitor. Three MRIs and an MRA, which meant an hour and a half straight in a tube, and at the end of all of it the results came back inconclusive. So my neuro team at Yale is reviewing everything.

That’s it, that’s the whole update, and that was my whole weekend. Sunday I rested and made sourdough. The sad part is that for so many of us with chronic illness none of that is abnormal, we just don’t talk about it in public.

Along with the tumor I live with six other autoimmune conditions. This is what that actually looks like. You’re fine, and you’re also not fine. One minute I’m on a phone call talking about something completely ordinary, and the next minute the doctor is on the other line saying those symptoms are concerning, I think you need to go to the hospital. You spend most of your energy managing it so it never gets in the way of what you’re doing, and most people around you never know.

I told almost nobody. My immediate family and a few of my closest friends, that’s it. So some of you are reading this and finding out for the first time (sorry), and I don’t want to be shocking, that isn’t what this is about at all. I’m just done hiding it, because hiding it was helping nobody, including me.

I have to own my part in this. For years I let other people decide what I could say and when, and I went along with it when I knew better. My health is the entire reason the company I founded exists in the first place, and I still went quiet about it. (This is how I operated as a people pleaser, fun fact, I once asked a boss if the timing was right for getting pregnant, so no this is not a new thing). That’s not where I am now. I work with an amazing team, nobody is telling me to keep quiet, no one is judging bad days. What’s left is me, and how programmed I am to keep it all in. Which helps nobody, because what people need to see is that you can be successful and still be managing a chronic illness every single day.

I also know how fortunate I am. I know how to advocate for myself, I have a medical team I trust completely, and I know what resources the Autoimmune Association has and how to go looking for answers. I walked out of that hospital Saturday evening without a single answer, but I also walked out with an action plan, and that’s more than most patients ever get. There are women and men reading this who are still waiting on their first answer, first diagnosis, still being told it’s stress, and still being told it’s in their head. On Saturday, I’m walking in Washington, DC, and I’m doing it for them, and for the research that still hasn’t been done.

For those of you who don’t know, the Autoimmune Association puts it at more than 50 million Americans, and says about 80% of us are women. Their own unpublished 2020 report put it closer to 80 million. The research these numbers rest on goes back to 1965. We are severely underfunded as a group, and there is still no national registry ⁽¹⁾ for us the way there is for cancer. Something needs to be done, and we have to start going after the root cause, not just the symptoms.

Having one autoimmune disease, or seven, doesn’t make you weak. I have never once thought of the women I know living with this as weak. It has made me stronger, and it’s made me appreciate a good day in a way that’s hard to explain. It’s shown me what I am capable of in the best possible way. Sometimes I lose site of that.

So I’m not staying silent. If you’re still waiting on your answer, I see you, and you are not in it alone. I’ll be thinking of you Saturday when I walk for hope and as always my DM’s are open if you need someone to listen.

With love from Dragonfly Farm,

Indie

PS You better believe I use AI for spelling and grammar check. Trust me it’s better that way. ;)

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(1) National Academies of Sciences, Engineering, and Medicine report Enhancing NIH Research on Autoimmune Disease, 2022.