There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me.
This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you!
I choose, I choose, I choose.
My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
Sign here X _________________
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section for Invisible Illness Awareness Week!
You Know You’re a Spoonie When:
-You have more cute socks and pajamas than sexy lingerie’ and heels.
-You are on a first name basis with all of the local pharmacists.
-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.
-If a stranger comes to your front door, you just hide until they go away.
-You have more salts in your bathroom than the DMV road crews in the winter.
-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).
-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).
-Your doctors and favorite nurses are on your Christmas card list.
-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).
-Your pets seem to have a better understanding about how you are feeling than anyone else.
-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.
-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!
-You start to talk to your Spoonie friends online more than you talk to your friends and family.
-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.
-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)
From my Spoonie friends: You know you’re a Spoonie When…
-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams
-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired by –Living Life Beyond Disability
-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs
-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn
-You know all the different medications and their side effects. -Julie Pierpoint
-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired by –Sick and Sick of it
-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield
-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert
-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles
-You make fun of the television commercials about medications that “help” symptoms like yours. inspired by –Finding Out Fibro
-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski
-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome
-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker
What are yours?
If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”
This article was featured on InvisibleIllnessWeek.com 2014. Sharing again here in honor of Invisible Illness Week 2015.
I’m in tears, silently cheering for this amazing warrior who is standing and giving a voice to all chronic survivors as you will be.
I hope you will rise up with her and pass this along.
Whether you have a chronic illness or you know someone with one, this wise young woman’s words will help to give meaning to so much that is unexplained.
Dear healthy people,
Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)
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