I have mixed feelings about awareness weeks. Awareness is great, but sometimes I feel like it doesn't move the needle just by being aware that certain disabilities, illnesses, or stigmas exist in the world. And yet, as was stated more than once in a course I took on implicit bias: "aware is halfway there." So maybe there's something to it.
Coincidentally, this awareness week is the same week I am taking a photography course in Oregon. Last year, I took the instructor's course in Nevada. It was great! And, I was exhausted most of the time. In hindsight, I can see that I was crashing. Too much stimulation, too much exertion, too much excitement (and too much jumping).
I had confirmed my trip for this year shortly before I was diagnosed. Once I started to understand how my body was using energy, I searched the internet for travel tips. It was interesting to see some of the things I'd already started doing in recent weekend trips to support my own well-being. Clearly, I listen to my body more than I give myself credit for.
I've put some additional strategies in place for this trip--gleaned from others who've gone before me--in the hopes of mitigating the post-exertional malaise. Some of these strategies are as invisible as the disability itself; others will make it more obvious that I don't go about some tasks like others do.
I'm not so sure it's awareness I'll need as much as empathy.
One cool thing I discovered in an ME/CFS support group is the Hidden Disability Sunflower Program. Increasingly, businesses around the world--and airports in particular--are recognizing the sunflower as the symbol of invisible disability or illness. A visual prompt for awareness and empathy, as it were.
I've put some additional strategies in place for this trip--gleaned from others who've gone before me--in the hopes of mitigating the post-exertional malaise. Some of these strategies are as invisible as the disability itself; others will make it more obvious that I don't go about some tasks like others do.
I'm not so sure it's awareness I'll need as much as empathy.
One cool thing I discovered in an ME/CFS support group is the Hidden Disability Sunflower Program. Increasingly, businesses around the world--and airports in particular--are recognizing the sunflower as the symbol of invisible disability or illness. A visual prompt for awareness and empathy, as it were.
All four airports I will be travelling through are part of this program.
[Insert sigh of relief here.]
I have a lanyard that I'll be wearing, as well as sunflower stickers on some of my belongings, that I'm hoping will--as their website says--"make the invisible visible."
We'll see how it goes. 🌻
We'll see how it goes. 🌻
