Hello one and all and welcome to August! I hope you guys are keeping cool and staying hydrated!
I was given the honor of introducing this month’s newsletter, so I guess I should introduce myself first. I’m Christina and I’m 25. I am an artist and vlogger by trade, and an EDS+ patient by birth (along with my sister).
First off, how are you guys holding up? It’s been a few busy months of advocacy for a lot of us. Take a deep breath and let it out slowly! EDS/HSD awareness month, Lyme disease awareness month, Pride month, Disability Pride month, Ehlers-Danlos Society Global Learning Conference, etc. I don’t know about you, but my head is still spinning!
I must say, though, I absolutely love seeing you guys out there in your communities speaking your truths, raising up other voices, and growing that sense of community that I dearly wish had been available to me when I first started out. It’s a reminder to me of how far we have come in such a short time. So why should we stop? Our challenges don’t just disappear when our month is up, so why should we?
Having a rare condition can be very difficult to advocate for and it can be so isolating – especially if we don’t have a caregiver on board. That, in itself, is why we need to continue the advocacy! The reality is that it continues to be our job, as chronically ill individuals, to be good self-advocates and know our needs and our rights within the healthcare system. This job is a full-time challenge, which is why I am such a huge fan of Chronic Pain Partners! I have been watching their videos since I was diagnosed nearly 9 years ago, and there is always something new to learn. CPP has been doing virtual seminars since before it was cool!! Plus, they are FREE, which is incredibly generous and allows the community equal access to the information they need.
Having easy access to these free presentations, by the best doctors in the field, is a tremendous gift. CPP’s webinars have been helpful to me and to my medical providers as well. Instead of having to explain my condition in full, I am able to shoot my providers a link and trust that they are getting the latest and most accurate information. And watching the videos myself has given me the power of better understanding my body so that, when I go into my appointments, I’m less overwhelmed and more able to have an educated conversation with my provider and come prepared with questions to ask for my care going forward. As a community, let’s continue the momentum of the advocacy-months – keeping the conversations going, amongst ourselves and with the greater community. Going forward, I hope these newsletters inspire us to stay connected, stay educated, and, just maybe, make a few new friends along the way!!!
– Christina Doherty