How can I make my family understand how much pain I’m in?

How can I make my family understand how much pain I’m in?

They don’t get it – how can I help them understand how it affects me and my ability to do things?


Community Answers
  • pbarry23
    6 months ago

    Is this true for anyone else….some days I don’t use a cane, some days I use a cane, sometimes I need to be pushed in a wheelchair (like at Longwood Gardens-would be lots of walking), sometimes my pain goes from a 3 to an 8 over the course of an hour, sometimes I cry because of my pain, sometimes I can laugh in spite of my pain.

    This can be extremely perplexing to people/friends that I let into my life. I recently let a friend into this part of my life and she was like “I don’t understand, are you really in pain? Why were you using the wheelchair at the gardens but not even using a cane today?” I was crushed…she is a nurse too, I was like….wow. How isolating.

    Peace, Pattie

  • Jdubb187
    1 year ago

    Hi, itold my husband once to imagine his arms and legs being pulled off, and then imagine that youre not imagining it. I know its crass, but its honest and i think thats what helps him understand. He sees me struggle daily & he knows im not “faking” because i am honest with him and i dont try to hide the pain anymore. Its just not worth it.
    He sees the stress im under, he sees me giving myself injections, he drives me to dr. Appts. He is my best supporter & its because he sees it all. Just dont hide it, i tried that before and it just didnt work out. Be open & honest, it works!

    Best of luck & STAY STRONG!

  • pbarry23
    6 months ago

    Hey jdubb187,

    I tell people “ I wake up from a coma to find out the someone has taken a sledgehammer to my joints and I say, oh…that explains the pain”

    I still can’t believe how much pain I can be in. It is so isolating at times. It completely consumes me.

    Have a pain manageable day everyone.

    Peace, Pattie

  • VickiN moderator
    1 year ago

    I would send them to the site to read stories from our contributors. Sometimes it helps having the info and advice come from a third party! Leanne wrote a great article about how to be supportive here:
    https://psoriatic-arthritis.com/uncategorized/providing-emotional-support-a-beginners-guide/
    Warm wishes to everyone struggling to find an empathetic ear,
    -Victoria, Community Moderator

  • pbarry23
    6 months ago

    I haven’t read. That one, thanks for posting!

  • klynn
    1 year ago

    Please have them read a short story online called ” The Spoon Theory”
    It has helped my family understand my psa better.

  • Cmstark
    6 months ago

    The spoon theory is my best explanation as well. Learning to plan for pain is a very difficult thing to do, and even harder for someone to understand that hasn’t experienced chronic, debilitating pain.

  • Rebecca moderator author
    1 year ago

    I *love* this suggestion, klynn! I especially like how she outlines that you’re required to think ahead – because you know if you do x then you won’t be able to do y, or if you do x you’ll be in pain…it’s like every action has a consequence?

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