The commenters came for me
Yesterday, I posted a video on TikTok espousing the benefits of eating at least three servings a day of fermented foods such as kimchi, saurkraut, and Greek yogurt. I did that because I had a really long, terrible experience with gastrointestinal issues (which I explained here), and discovering fermented foods was an absolute godsend for me. So I thought I’d share that tip with anyone else who might be experiencing the same thing.
Almost immediately, the comments started accumulating from folks who have MCAS (Mast Cell Activation Syndrome) in addition to their Ehlers Danlos. They told me that this would be a terrible idea for anyone with MCAS because the histamines in fermented foods could cause a severe reaction. Some of them were kind about it and clearly wanted to educate me, and others were less so and just wanted to be angry on the internet. Regardless, I appreciated the feedback and the opportunity to learn.
I spent last night reading up on MCAS and why fermented foods might be a bad idea for those folks. I don’t suffer from this condition, and didn’t know anything about it. It was simply outside of my awareness. Now I know, so I can do better.
The key learning for me here is that, if something helped me and I want to make a post about it, I need to take an additional step to check for any clear contraindications so I can mention those in the post. For example, in another video I did about adding sea salt to my water to help with EDS symptoms, I made sure to mention that you should check with your doctor before doing this because it’s dangerous for some people (like those with high blood pressure). But that’s because I happened to know about that risk - if I hadn’t known, I probably wouldn’t have mentioned it.
Look, I’m just a woman on the internet, out here doing my best to try to make my corner of the world a little better. I genuinely want to help people who don’t know where to turn, because I’ve been that person and am still sometimes that person when new, mysterious symptoms happen. I’m not a doctor or expert, nor am I pretending to be. I’m just sharing things that have worked for me. I’m not always going to get it right, and I appreciate when people call out my mistakes so that I have the chance to learn and correct them.
My larger point here is, we should all be taking any advice we get from anyone with a grain of salt, whether they’re a stranger on the internet or a doctor who doesn’t really know us and is trying to hurry us out of their office so they can get to their next patient. How many of us have gotten terrible advice from doctors? Even experts don’t get it right all the time. I generally do seek out and trust experts, but that doesn’t mean that I don’t ever question them or fact-check what they’re telling me. And content creators are no different. We’re all just people, ya know?
