Time to take action

In this discussion I’m turning it around. I don’t know when I’ll be in remission and I’m sure after that the comments will keep coming.

We all get the dreaded comments:
You are just bored.
You were fine yesterday what’s wrong with you… I can go on but I won’t.

I thought it would be good to creatively educate those who falsely accuse and don’t understand what we are going through and I’d love your recommendations too.
Here are some of my responses that have helped people:

  • it feels like the elastic band is too short, I can’t stretch it as far as I thought and I’m in a lot of pain while trying to do this.

“You are just bored”

  • no I’m so tired it feels like someone shut off my brain and I have bricks laying on me.

"If you r in so much pain why r you walking?

  • I also have fibromyalgia and studies prove brisk walking helps.

You were fine yesterday

  • yesterday I wasn’t out in 90 degree weather. The heat causes pain, my fingers to swell then it feels like someone is giving me shots constantly in my hands. The pain is traveling all over my body.

I figure by now if people close to me haven’t researched what I hav it’s time I really tell them how it feels.

Christy, having dealt with several chronic illnesses, including incapacitating pain at one point, I really understand your frustration with with people who don understand.

My experience is, too many people are not compassionate. But what goes around comes around, as friend of mine says, and though I would not wish illness on anyone, something drastic happening in their own lives helps them to learn and grow. That's when they get it, and maybe even luck back and want to rattle themselves a bit.

Being assertive is a positive attitude to have. But we don't have to justify our different abilities to everyone. My husband is the one who got me to know that.

I hope sooner than later those in your life begin to understand what you go through, that you didn't cause to happen, or ever want to have to deal with. If not, look for positive and aupportive people to interact with. I know, hard when it is family.

Make a list of websites that support lupus patients and have a lot of info. Email the links or print out articles for the people in your life. Hand them to them. It's up to them from there. The only thing we have any control over is our own behavior. big hugs!