Today is a big day for us spoonies.
It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.
While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.
Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.
Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.
I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.
Keep going one day at a time!
Friends and family,
If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.
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Happy Rare Disease Day to all the wonderful spoonies out there!
I’ve been too fatigued and in so much pain that I just couldn’t get myself to post anything ,but, seeing my Instagram feed filled with so many amazing posts trying to create awareness for rare diseases brought me immense comfort and a sense of relief – we’re definitely not alone. I’m so thankful to have come across such a courageous and inspiring community on Instagram. Knowing that I am #rare and yet there are so many others out there just like me gives me strength to keep going, even through the most miserable of my days.
Here’s to finding cure, and until then, having hope and faith for a much better future.