You remind me that alongside the bad days, there are good days! I've found it so hard to believe that consistently recently. I've only been diagnosed with hEDS for a year, but even before the official diagnosis, it had massively impacted my life. I also have Crohn's Disease, which adds further complications. I recently did a rehab course, and there were other hEDS folks there too, so that was nice to get to see other people in real life who have these pesky collagen 😅 I was quite shocked that I was the secondly most badly effected by it, as I previously thought it was very mild, and even had doubts about the diagnosis (although my psychologist did say a lot of this is medical trauma and gaslighting). I am so fortunate not to have bad digestive issues with it, but the Crohn's can certainly nake up for it, lol. Anyway, I know it's horrifically overused and cliché, but you are an inspiration. To find the light and the joy and even just the 1 tiny good thing in the day, when all you can feel is pain and despair. Thank you for sharing your jouney, not just on social media, but with the youth groups, etc as it's so important that people learn that disabled isn't a slur, a reason not to do something, or a reason for people to point and laugh. Thank you ❤
I’m watching this on my TV and then commenting on my phone. I want you to know that I can relate to your story about your friend making you feel uncomfortable about your catheter bag. But I can also tell you that it’s because of you that after 20 years I wear shorts in public you did that Ruth! You!! I love you you matter so much
You remind me that alongside the bad days, there are good days! I've found it so hard to believe that consistently recently. I've only been diagnosed with hEDS for a year, but even before the official diagnosis, it had massively impacted my life. I also have Crohn's Disease, which adds further complications. I recently did a rehab course, and there were other hEDS folks there too, so that was nice to get to see other people in real life who have these pesky collagen 😅 I was quite shocked that I was the secondly most badly effected by it, as I previously thought it was very mild, and even had doubts about the diagnosis (although my psychologist did say a lot of this is medical trauma and gaslighting). I am so fortunate not to have bad digestive issues with it, but the Crohn's can certainly nake up for it, lol.
Anyway, I know it's horrifically overused and cliché, but you are an inspiration. To find the light and the joy and even just the 1 tiny good thing in the day, when all you can feel is pain and despair. Thank you for sharing your jouney, not just on social media, but with the youth groups, etc as it's so important that people learn that disabled isn't a slur, a reason not to do something, or a reason for people to point and laugh.
Thank you ❤
I’m watching this on my TV and then commenting on my phone. I want you to know that I can relate to your story about your friend making you feel uncomfortable about your catheter bag. But I can also tell you that it’s because of you that after 20 years I wear shorts in public you did that Ruth! You!!
I love you you matter so much
#roocrew❤