Reading on the ankylosing spondylitis awareness page....they ask a question-
What do those of us who have chronic pain-live with chronic pain- wish that those of you that don't knew.
If we wrote a letter what would we say---reading so many of the comments and wanting to "like" them all, I decided to just steal them! Copy them here for you to read. It's exactly how I feel. It's exactly what I'd say! They need to be shared! It's not easy for those of us with chronic pain. It's not easy living with AS! So take the time to read...
-Enjoy being able to do whatever you want without thinking of the consequences
-Sometimes the pain is so bad, I'd rather die than face it another minute
-Sometimes it causes me to scream and cry or bring a grimace to my face
-Don't forget to thank God for the ability to eat without throwing up or walk without a shuffle or limp
-"Sucking it up" is not always an option-sometimes nothing helps
-Don't tell me how to feel, would you tell a cancer patient to "suck it up"?
-Please don't think I'm angry if I don't smile or if I'm short with you that you've done something wrong. Please don't think that I don't love you if I ask you to hug more gently or if you forget I grimace or tear up! Please don't think I'm rude if I don't shake your hand.
-I appreciate your help, but do not pity me and let me ask you for what I need
-My pain tolerance is higher than yours will EVER be
-I pay a price for EVERYTHING I do, just cause I'm "looking" fine today...
-Do not assume that because I'm in pain I should look sick or broken on the outside
-I am terrified at the fact that I will live under a doctors care for the rest of my YOUNG life
-I can't just live carefree
-I must have weekly injections (even daily pills) of all kinds of horrible medicines for the REST OF MY LIFE
-I struggle daily and I don't want pity, just for you to listen if I need you too.
-Don't ask me what I have and then when I start to tell you zone out--you asked so at least act as if you care
-Have YOU ever been in a car wreck or had the flu--how'd you feel? Well, that's how we ASer's feel EVERY SINGLE DAY multiplied by a million at times. Have you ever been sore all over? Thrown your back out? Called in sick? Well, we can't call in sick or we'd never go!
It would be selfish for those of us with AS to ask you to walk in our shoes, but if you did, you'd never take a single day for granted again.
We hurt! I hurt! But, I am hopeful. Hopeful that one day there will be a cure. Hopeful that one day, just maybe, you'll understand---I did not choose this future. I don't want this as my future. I do have AS so try and understand, just try. I know you can't. Unless you've walked in my shoes, you'll never--NEVER understand. AS has my body, but not me!! I refuse! So, when I jump out to get the mail or celebrate for a min. or sing a song or even have a dance off with my girls...know this, I've thought about what will happen after. I know there will be consequences. I know that I could end up in a long "time out". I know that everything...EVERYTHING..I do will cause pain. Will that pain be worth it? When it comes to my family...yes!