To participate in Invisible Illness Week, my friend, Shai Ford, has written openly, emotionally, and with great vulnerability about what it is like to live with not one, but two, illnesses that are “invisible” to people, meaning their symptoms are not easily seen.
I am sharing her post today because we need to be more aware. We need to give support to our friends and loved ones who suffer (and yes they do suffer). So many diseases have huge support of the public because their symptoms are highly visible. And yet, “invisible” illnesses are just as debilitating, but not as fully-supported because we lack awareness.
So, she has written to obtain support. To get the knowledge out there. To express her life. So that we can know that:
“It’s picking up your cell phone (or a glass of tea, a dish, a pile of laundry, or anything else a mom, wife, or business owner may pick up), and watching it hit the ground before you realize you didn’t actually have it in your hand.
It’s wanting to spend time with people, but not wanting to explain that a 15 minute drive for coffee simply hurts.
It’s having a great hatred for spoon-sucking grocery stores…because driving, and cold, and carrying, and lifting, and everything someone with RA doesn’t want to do all in a short period of time.
It’s completely avoiding sitting on the couch or laying down with the kids because a) You’re not sure you can get back up and b) You know you have the ability to fall asleep in .2 seconds.
It’s being completely exhausted by something as simple as changing clothes or taking a shower.”
to just show you a small excerpt from her post.
It would be truly wonderful if you could take a few moments and read her post….all the way through the list of 30 things. And grasp at understanding. Walk a mile in her shoes for just a moment. And if you know someone with a debilitating-though-invisible condition, give them understanding and hugs (gentle-pressured ones). Let them know you are available for whatever they need, for instance:
*Help with grocery buying. Carry them in and put them away.
*Take some time with the children so your friend can just sleep.
*Be available to escort/drive for errands so the stress of driving is less.
*Make meals, set them up, help serve, clean up after. Because the spouses/significant others are often stressed to the max too.
*Do yard work. Clean their house. Do laundry. Just think of all the tasks we do on a daily basis that tire us. Then think of how they must feel in their complete and utterly debilitating exhaustion. Help them!
This is a minimal list, but I’m sure you get the idea. I have a friend who suffers from a connective tissue disorder and her physical symptoms run parallel with Shai’s. It’s a very difficult life, and I try to help her in any way I can. You, too, can make a difference in someone’s life. Share her post. Be on the lookout. Be an advocate for them. And offer assistance.
Joining you in the trenches, Shai, to help our friends and loved ones,
Passionista Mimi