So, often we talk of ways in which those of us with chronic illnesses can support each other. This got me to thinking about how our family, how our friends who don’t experience lupus or a chronic illness, can support us. Rather than weave my thoughts about support into a long story, I’ll list them, because I think that way, they receive more emphasis:
- Don’t you wish that family and friends would know that I’d rather be doing ANYTHING than spending every spare minute going to see doctors, having tests, researching my illness and possible treatment for it? I long for the life I had before lupus hit and created a different reality for me.
- I wish people would understand that my illness is somewhat like your flu: I’m tired, I ache all over , I can’t think: but, I have to ‘forge on’ despite it; but the difference is, MY FLU DOESN’T GO AWAY!
- I have a job, contrary to popular opinion. It’s called REST and there’s no compensation in the money department!.
- The best thing you can do is know that you can’t ‘fix’ it, and know that you can’t make it better. Still be my friend, Just showing me that you care, does more good and helps me MORE than you’ll ever know.
- If I say that I’ve had a bad day, that doesn’t mean I’m asking for you to make the day better or to feel badly that I’ve had a bad day. I’m just venting my anger because it’s rare that I have a ‘good day.’
- Whatever you do, please don’t exclude me from activities. I may not be able to rock climb, hike or bike with you and the others, but I can meet you for a cup of coffee when you’re done.
- When people say, “I wish I could rest all day, too,” please know that I’d give my ‘eye tooth’ to go back to my job, to being a productive employee again. Also, my rest is not comfortable a comfortable, refreshing rest.
- Please don’t lose patience with me if I repeat myself. Sometimes my brain doesn’t remember that you’ve heard my story more than once!
- You can say things that make me know that you understand how my illness impacts my life, like, “I understand how difficult it was for you to join us today.” Or, “I can’t imagine feeling that badly all the time. What strength it must have taken to get up, dress and join us.
- If you can, offer to do some things for me, like drive me to the doctor, vacuüm that living room floor, grab a few things for me when you go to the store or cook a meal. Don’t wait for me to ask, OFFER, please.
This list was adapted from a handout I received at a support group meeting. If we could ALL support each other in all endeavors and IN LIFE, just think of how much more wonderful a world it wold be!
- Positive thinking helpful in coping with, but perhaps not banishing, chronic illness (drbradshook.com)
- More On: What Those with Chronic Pain or Illness DON’T Want to Hear You Say (psychologytoday.com)
- Stupid Things People Say (butterflywarrior.typepad.com)