02/05/2026
These are some notes from my journal that I thought someone out there might get something out of.
What chronic illness has taught me:
🌸 How to be strategic and intentional with my available energy.
🌸 How to be more efficient in every task from daily household activities to working.
🌸 Who my real friends are.
🌸 How to set and maintain boundaries with other people (in order to support my wellbeing).
🌸 Maintaining boundaries results in other people being displeased with me. I’ve learnt to accept that as the tradeoff for attempting to improve my wellbeing.
🌸 Good luck and bad luck can be a matter of perspective (it’s subjective). Sometimes when you lose, you win.
If I hadn’t gone through all of the suffering, humiliations and difficulties, I would not be the person I am today, in exactly the place I need to be in life right now. This perspective has helped me get through a lot of the rough days. Being philosophical about disability and chronic illness isn’t for everyone but it’s what works for me.
I would love to be able to effortlessly walk, talk, write and type and work more according to requests (I definitely appreciate the interest in my services), but instead I have a different life. And, although it’s not easy for others to comprehend and work with, everyone that is meant to be in my life, is and will be. This type of lifestyle is precisely effective at sorting people out.
I constantly need to reassess on a daily and often hourly basis what I can do. It results in cancellations, much offence, misunderstanding and everything in between. It’s super tricky!
Complexity can also lead to a simple life that’s beautiful in many ways.
I’m redesigning my business and other work activities to create systems and an environment that actually works for me instead of trying to maintain the standard version of what professionalism is supposed to look like. It’s a very interesting process.
It all challenges me to show up as exactly who I am without masks and filters and at the same time will hopefully enable me to take on more clients, feel better physically and do more of what I want to do.
Rest is often the best medicine.
Rest is empowering and gives me the opportunity to reassess and create even more aligned goals and plans of action.
I’ve learnt and trained myself to live unapologetically a life that aligns with me and my circumstances.
It’s both limiting and liberating at the same time.
Many paradoxes. Rich, messy, deep, interconnected. I understand it is hard to fathom if you haven’t experienced it. It certainly teaches me a lot about myself, other people and the social human systems people like me mostly get to witness but not participate in much.
Inclusion is the key. Has a way to go. Communicating more about it I hope will help with more shared understanding.
May is Ehlers-Danlos Syndrome awareness month. I mostly don’t have the energy for all of the awareness months and days anymore. But, I happened to write this on the first day of May, so here we are. 🙂
In terms of actual information to create awareness about what EDS is, the quickest point I can make today is the old saying: if you can’t connect the issues, think connective tissues. EDS affects the connective tissues (found all over the body) and people with undiagnosed EDS often have a long list of symptoms that seem unconnected. It’s poorly understood by doctors (many can’t pronounce or spell it) and it’s often expensive in terms of equipment needed and therapies and often the lots of different doctors involved (also known as ‘disability tax’).
EDS co-occurs with autism and ADHD.
Thank you for reading! 💛🙏
Image description: a cartoon Kory with a speech bubble that reads: May is Ehlers-Danlos Syndrome awareness month. Autie Talk logo & www.autietalk.net in right corner.
