Friday, August 15, 2014

Chronic Pain Etiquette

From time to time, I have been asked by friends and family (sans pain) what is appropriate to say to me (/someone they know dealing with chronic pain) and how I would prefer to be supported by them. For a long time, I had no idea so I just went incognito for awhile (more on that in an upcoming post).

I think, unintentionally, people would say things that I thought were ignorant and generally pissed me off. I'm sure all of you reading with pain can relate and everyone that's reading that are fortunate enough to be pain free , read up, because this is some shit you'll want to know.

DO:

  • Be supportive.
  • Call and check on them.
  • Be respectful.
  • Research to better understand.
  • Visit occasionally (if they are up for it, they may turn you down but it is nice to offer.)
  • Offer assistance when you can.
  • Tell them you care, show when concerned.
  • Send things. Whether you feel like going through the effort of a "care package", a card, anything!  I love funny stuff and people send me funny Youtube videos, someecards.com cards, motivational quotes, good music, TV show and movie suggestions…whatever! I love it all and really do appreciate it. 




DON'T: 

  • Make suggestions about their medication or management for pain. (I am in several groups and forums for people with chronic pain and this is probably the most bitched about subject. Everyone is different and sometimes opinions you think are valid could be counterproductive and actually do more harm than good. Best to just keep it to yourself.)
  • Ask for pain medication.
  • Tell them they don't "look" sick.
  • Act like they are contagious. (This is really dumb, but needs to be said.)
  • Say they're faking it.
  • Say it's all in their head.
  • Tell them to "get over it".
  • Say the illness they have doesn't exist.
  • Comment about their mental health. 
  • Make uninformed suggestions about diet, exercise, etc.
  • Assume they're being flaky and take it personally if they're forced to cancel plans. 

THINGS TO SAY: (This may be redundant to "do" and "not do" but this is a crash course on chronic pain etiquette for dummies and can't ever just assume--because you know what happens when you assume.)
  • "How are you doing today?"
  • "Is there anything I can do to help you make your life easier?"
  • "I am here for you, whatever you need."
  • "I am so sorry you are going through this."
  • "I hope you start feeling better soon."
  • "I really admire how you're handling all of this. I know this is difficult for you."
  • "I will keep you in my thoughts."
  • (If you are with them and they are having trouble moving/generally getting around) "You look like you're having a lot of pain, let me get that for you."
  • "I am so sorry I judged you before I understood your situation."


THINGS NOT SAY: 
  • "You need to exercise more."
  • "Aren't you feeling better yet? I feel like you've been sick forever."
  • "Maybe you're just depressed."
  • "It's all in your head."
  • "I wish I had time to take a nap."
  • "If you just had a more positive attitude…"
  • "I know ______ and they do _______. You should try it."

  • "There's no way you're in that much pain."
  • "You're just doing this for attention."
  • "Work through the pain!"
  • "You're too young to feel like that."
  • "Just tough it out."
  • "If you just got out of the house some more…"
  • "You're so lucky you get to stay in bed all day!" 
  • "What if you just found God?" (To anyone that's religious, I apologize. I am not a religious person and this is probably the most annoying thing you can say to me and the closest I will come to punching anyone in the face. And yes, this has actually been said to me several times---I live in "God's country", dammit.)


Enjoy! 

3 comments:

  1. I would rather people not ask "How are you doing?" But rather "Do you want to talk about how you feel". The first question is harsh, intrusive, demanding. The second question gives me the control and allows me to say: "no" when I am doing well, "no" when I don't want to be a sick person, "no" when it is a bad day living in my illness and pain but I need a distraction from it, "no" when I have answered this too many times that day. I am going to begin telling those close to me that this is how I would rather be asked.

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    Replies
    1. That's a good point, Jamie. Now that I've been dealing with this for about 2 years now, I would rather people not even bring it up at all unless I feel the need to talk about it.

      I told my mom the other day that if one more person asks how I'm feeling, my brain will probably blow up! At this point, I would rather just have complete distraction and no talk about what's going on with my pain and progress because there are so many other things to talk about and I start to feel like a broken record!

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  2. The last bit of the blog reminded me of when a guy saw me in my wheelchair and said "You will walk again, God will cure you", or something like that. I was really tempted to say "I know I'll walk again, in about 10 mins when I get where I need to be, as I only use this intermittently", or simply just get up and walk! But that would've been cruel. What a weird experience that was.

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