I've been writing on and off about my struggles with chronic illness for about a year. A lifetime connective tissue disorder (Ehlers-Danlos Syndrome) and then the slap in the face of two new illnesses (Postural Orthostatic Tachycardia Syndrome and Histamine Intolerance) sneaking up on me last year left me bed-bound, feeling my life was over, and in need of an outlet.
Desperate, with meds making me sicker, doctors making me angry rather than helping, I turned to food as medicine. I've written about this in detail before (so I won't bore you now), but aside from the health impacts of what I'm eating, I've become more and more interested in the social side of what I'm doing.
For about five months, my 'writing about health' thing has moved over to Instagram. And while it is an amazing platform, it doesn't do justice to the complexity and importance of understanding the science and the why behind a lot of what I choose to do.
I have been finding my relationship with Instagram to be a difficult one. On the one hand, I have absolutely loved connecting with likeminded people. It turns out that most people I've met have started this food journey out of some kind of struggle, be it chronic illness, eating disorders, or depression. Of course, this isn't everyone, but it is particularly inspiring to see the wide range of people that it has helped - and so there definitely has to be something in it!
I never set up my account to be 'known', and now with fifteen thousand followers, I think I can safely say (without sounding big headed) that I am. Being told that I have inspired people to make changes in their life is absolutely wonderful, and it makes everything worth it. I actually set up my Instagram as a way for me to stay on track when I changed my diet. I literally couldn't stop myself from self-sabotaging. So I just started a food diary on there. It's actually really cathartic to take pride in the appearance of my food, and it has helped me be more mindful of what I put in my mouth.
I wasn't sure if I should write about this, but the one thing that does sometimes bother me on Instagram is that people seem to feel they have a right to comment on my diet, and go about offering unsolicited advice. I understand that many people are doing this because they genuinely feel like they're helping, but I it often can be more problematic than people think. People who have been following me for a while will know that if I advocate for one thing, it's for balance. It's for doing your research (online and about your own body), and trying things that work for you. I have found what is working for me right now - and ok, I haven't been as good as I necessarily should be over the last few weeks, but that's ok. There's a very weird thing happening in my brain at the moment. Last year I couldn't eat half a banana without feeling like I was going to die and needing days to recover. Now I can eat again without many adverse consequences. So telling myself I need to get back on track with my liquids all the time is a bit difficult. My brain is like 'Nahhh, you want food! And you can! Enjoy it, baby!'
I didn't go 'off the rails' or totally off track. I've just been indulging a little more than I probably should. But you know what. Right now, I'm ok with that. The thing that I find difficult is the daily comments (some days it's just all day) of people telling me to eat certain things, to ask me why I'm eating x when I should be eating y, offering up potential medical conditions that I may have, and what they see as cure-all diet solutions. These messages particularly affected me when I was extremely unwell over the last couple of weeks.
I just want to make something very clear. It's dangerous to go around doing this because some people will just blindly follow what they're told out of desperation. Look, I get it. I've been there. When you're so sick and don't know what to do, you'll grab onto anything that has worked for someone else. I'm very lucky that I'm a very research minded person when it comes to my own body. Every medical professional that has met me has told me that I'm one of the most self-aware people they have ever met. I've got to know my body pretty well. I know that people are only trying to help, but if you're basing your opinion of my overall health on two Instagram posts, you're not going to be able to diagnose me with candida or anything like that because you don't really know anything about me. And I've tried going raw vegan, but my digestive system simply cannot handle it. Just because it works for you, it doesn't mean it will work for me or for anyone else.
I have worked super hard to get where I am today health-wise. It has been the result of non-stop research, speaking to more people than I can even count, and daily experimentation on myself to find what works. And there's just one thing I want everyone to remember. We are all different! Someone with the same three conditions as me can eat foods that I can't, and vice versa. There is no one-size-fits-all cure.
I am constantly grateful for the opportunity to meet and interact (and hopefully inspire) people from all over the world and share my personal journey with them.
And look, I get it. I put my health highs and lows out there for the internet to read. So of course, I expect to get people sharing their thoughts. But I'm sharing because I know what it's like to feel alone and desperate and not know what to do when you're 24 years old and feel like your life has been taken away from you. Seeing that there are other people out there working their arses off to try and heal - actively (not passively waiting for the medicines to work - which for me, they never did) helped me more than anything else. I just wanted to know there was another option.
I do just wish people would take a step back before offering up their opinions of something as personal as health over the internet. With all the best intentions, and with very little information, they could be leading people down paths that their bodies just aren't ready for.
Please think, research, and be mindful that we're real people behind the pictures.