Inspired by my co-sufferer, Candice at Embrace GFree, I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is introducing you to my condition(s).
When I started thinking about this prompt, I was debating if I should address it from a food allergy/sensitivity perspective or from the perspective of someone who has CRPS. The more I thought about it, the more I realized just how similar having an invisible illness is, no matter if it is a common autoimmune disorder such as celiac or something as rare as Complex Regional Pain Syndrome.
So, here are 5 things I want you to know about living with an invisible illness:
1. I am not my illness.
Yes, my food sensitivites and allergies dictate what I can and cannot eat. Yes, my chronic pain dictates how much activity I can handle. But I am still me. I still like shaking my booty on the dance floor when I can tolerate it. I love exploring new restaurants and trying new cuisines. Have a summer festival you want to check out? Well, this lady would love to go. I am a 28 year old who does normal 28 year old things.
I go on dates. (Well, sometimes). I like grabbing a drink with friends. You might even convince me that a baseball game would be fun.
I speak French and German. I write a gluten-free blog. I enjoy sci-fi.
Oh, and I have a rare disease. But I am all those other things first, and so are you.
2. The internet is full of badness.
From misinformation to inflammatory posts, the internet can be a scary place. Throw in people who can be so passionate about their views and opinions that it borders on bullying (or heck, some of them are actual bullies), and you have a recipe for disaster.
Find people you identify with, but who don’t bring you down. Follow sites and blogs where positivity is the focus.
And double check any claims or treatments you find with your doctor. You might have found something legit they hadn’t heard of, and you might have come across some hooey.
3. My illness is not your illness.
My gluten-free & celiac friends have taught me this. They are often saying “My celiac is not your celiac,” and it is a sentiment that is relevant to any chronic condition. Just because someone has the same diagnosis as you doesn’t mean that their experience is the same as yours. In fact, while it might be enlightening to learn about how someone else with your condition is living, it is just as important to remember that your body is unique and that no matter how similar we are, our bodies are not the same.
4. We’re all learning.
I am always learning new things. About my illness. About possible treatments. About myself. There is new research all the time. Science is evolving. People have had my diagnosis for years longer than I have. I have had it longer than others.
So be open to learning. Be willing to teach (not preach!).
5. Cupcakes are therapy.
And at some point in this existence, my job title is going to be “Cupcake Therapist”.
Enjoy a cupcake when it is warranted. Eat broccoli when you should. Never eat broccoli when a cupcake is called for.
If you want to know more about living with CRPS:
- This article about blogger Danielle of the Project 3×5 is incredible.
- Candice at Embrace GFree talks about her diagnosis.
- And the article (that I link to a lot) about my decision to talk about my condition