13 Things you don’t say to a person living with chronic pain/ an invisible illness

marginalise my experienceI am now in my second year of living with 24/7 excruciating nerve pain in my neck, shoulder, shoulder blade and down my arm, my right arm and I am right handed. Over the past year I’ve dealt with all sorts of reactions and have realised that many people, some with the very best intentions, say the most hurtful things. Here are some things that you might want to re-think before saying to a person in perpetual pain.

invisible illness

  1. I know exactly how you feel. Trust me, you don’t. If you once broke an arm or twisted an ankle and lived with pain for a while and then it all got sorted, then you don’t know what living constantly with pain, sometimes with no end in sight really feels. So thanks for wanting to stand in solidarity but no you don’t know how I feel.
  2. You need to have more faith. This one is for my Christian brothers and sisters. Please encourage me, pray for and with me, send me Bible verses about healing but DO NOT ever insinuate that the reason why I am still ill is because my faith levels are too low. You are not the faith police and you don’t know what I do or don’t do when I’m alone with my God. Just be supportive and stay in your lane.
  3. Surely it can’t be that bad. Yeah you know this how exactly? I am probably not even telling you all of what I go through so take whatever I say and imagine that it’s hundred times worse not less. If  a chronic pain sufferer told you all of what they felt every time they felt it your head would explode because there aren’t enough words for what we go through.
  4. Surely it can’t be all the time.To some extent you are forgiven for your doubts because before it happened to me no one would ever have convinced me that anyone could be in pain every second of everyday. Yet, I sit here with what feels like a blunt object jammed into the area between my neck and shoulder as I have for over 12 months now. So yes, that time you saw me at a party I was in pain, when you see me in a shopping mall, I am in pain, when you don’t see me for months, know that I’m in pain and even when I’m asleep I am aware of my pain. There is no recess, I get “good” days when pain is maybe a 4 out 10 but for the most part it’s above 7. So surely it is all the time.
  5. Have you been to a doctor? No, I’ve just been chilling here enjoying every moment of feeling like there is hot charcoal inside my veins… good times. OF COURSE I HAVE BEEN TO A DOCTOR DAMMIT! Especially if I have mentioned that I’ve had this pain for more than a year, there is no excuse for you asking this question. I don’t even have any more words to this point because seriously, dah.
  6. Sometimes it’s just your mind playing tricks on you. This is usually followed by a story of some uncle or niece who was just missing a few things in their life and as soon as they found whatever it was their “pain” went away. Listen, I’m not any of those people so just take several seats and don’t comment on what you don’t understand.
  7. Geez you are no fun these days. Ok let’s see. I must hit the “pause” button on my illness and hurry up and be a ray of sunshine so that your life can run smoothly eh?
  8. You just have to speak to your illness and refuse to let it get you down. Yeah, lets break your arm in several places and see what sort of conversation you will have with it. You get a flu and you call in sick at work and tell everyone on Facebook  but then you go so someone who has something you don’t even understand and tell them to use their willpower to snap out of it?
  9. You are sick againNo, STILL sick from when you asked me a couple months ago and put a little more emphasis on “again”. It’s always comforting to know that my continued illness it becoming monotonous to you.
  10. There are people who are surviving worse. I know that and I am sad for them but be tactful with your timing. There are times when I am rational enough to step back from my situation and see the bigger picture, see where I have it easier than other people. But that time is not when I’m locked into one position and i can’t move a muscle because of the pain. You don’t come to me talking about people whose limbs were blown to pieces in a war in Iraq.
  11. You look fine to me though. Sooo you want blood to be oozing out of every opening in my body for you to qualify me for a person in pain?
  12. All those meds are not good for the body. Yeah, pills are my favourite dish that’s why I choose to take them. It’s not like the situation is forcing me to take them or anything.
  13. Just a few minutes ago you could do this but now you can’t? / I thought you said you couldn’t do this, so are you ok now or were you not being honest? I have ‘good’ moments and bad ones, sometimes I even have good days. So yes there are times when I can ‘live a little’ and carry a grocery bag. That doesn’t mean I’m healed. At times I know that I have to push through the pain, nomatter how bad it is. That’s when you see me ‘doing things that I said I couldn’t do’.

you dont look sick

This is not all, a lot of people with invisible illness endure more abuse than this. There is a lot you need to learn about people around you and the tact of communication. If you absolutely have no idea what the right thing to say is just say say,” I’m here if you need me for anything” and leave it there.