LindsayLike usual, I’m behind on my blog posts. I have about 5 drafts on different topics, but have yet to find the time to finish any of them. As you know, lots going on around here lately with my mom participating in the PSP study, and my blog is suffering. So, I was pleased when Victoria contacted me and asked if I would be interested in posting some of her content on my blog. Victoria owns the website Burning Nights about Complex Regional Pain Syndrome (CRPS) (visit her site here), but this graphic really applies to all invisible/chronic illnesses, including POTS.
I love this graphic because it pulls together so many aspects of having an invisible illness, but what I like most is that it includes not only things NOT to say to someone with a chronic illness, but also suggestions for things to say. Hopefully we all have some idea of what not to say (one of my 5 drafts is on that very topic), but what might be helpful to say sometimes eludes us. I have recently realized with caring for my mom that I am not nearly as good at saying the right thing as I should be. She fell today. She falls often – that’s common with PSP – but it doesn’t get any easier to find the right words with each fall. Somehow “I’m sorry” just feels incredibly inadequate, especially when you hear the anguish in her voice as she tells me she’s fine. More on that in another post, assuming I get around to it.
I also find it interesting that 69% of invisible illness patients were told they had anxiety prior to receiving a diagnosis. Something in the medical community has to change, and soon. Another one of my current drafts 🙂
Friends, take care of each other. Treat each other – both sick and healthy – with love and understanding. We’re all going through some shit.
“All the most real things, in fact, are invisible. No one has ever touched time. Truth leaves no fingerprints. Love escapes the five senses.” – Deepak Chopra
Smell ya later.
I really learned a lot from that graphic. Thanks for posting! It’s hard to understand for those of us that don’t suffer. It’s way too easy to take day to day health for granted! Thanks for the insight!
Maybe add this to your list of “What Not to Say”: “You won’t live very long with that heart rate of yours.” I have POTS, and someone told me that just recently, like I hadn’t already been in fear of my life enough.
Ugh, that should definitely be added to the list. As if we’re not already constantly fearing about the future!!