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.


God uses what you already have to help you.

God uses what you have to help you

Whether you believe in God/the bible or not, keep on reading, there is something for you in this article.

In the bible, in 2 Kings 4 verse 1 to 7 there is a story about a widow who went to Prophet Elisha and told him that her husband’s creditors were about to take her sons into slavery because she had no money to pay them. Elisha said to her, “What shall I do for you? Tell me, what do you have in the house?” The lady said she had nothing but a jar of olive oil and God multiplied that oil so that she had enough oil to settle her debt and some more to live on.

So, if you are a believer, think about what you want God to do for you. I am sure that one is easy and I’m sure there is a whole list of requests. Now, think about what you have that God can use to help you. Everyone has something. The widow thought she had nothing because she didn’t really think that a jar of oil would help much but that jar of oil was all God needed to help her get out of a difficult situation. I flunked out of uni and was left with nothing but my gift of words, I can talk and I can write. At the time that I found myself with no friends, family, money, opportunities, ideas and in the harshest economic climate I’d ever experienced. This gift seemed like nothing really. It took me three years to then talk and write my way out of my situation and now when I look back I realise that I did not catch a lucky break, God used the gift that He had already given me to promote me. Of course, it took a lot of knocking on the wrong doors at first, until one day, just as the widow ended up knocking on Elisha’s door; I knocked on the right ones and my gifts were put to use.

Whether you believe in God or not, you already have something that you can use to change your life for the better. If you want a job, you probably have some education or else you wouldn’t be reading this. Even if you have nothing but a little education you must have some skill. It could be doing hair and/nails, telling jokes, cleaning, an eye for fashion, an ear for music, a good singing voice, persuasion skills, fitness enthusiasm, a passion for caring for the sick, etc. No one was born with absolutely nothing that can help. The key is identifying it and knocking on the right door where you can get help to make it into something big. I know people who use their illnesses or tragedigod uses what you have to help you 2es to write books, make videos that they use to make money and help other people in similar circumstances. So if you think you have nothing but problems, finding solutions to those problems can be the solution to your whole situation. That’s how a lot of organisations are formed, someone identified a problem that needed a solution and formed an organisation that is all about solving that type of problem.

If you are still trying to figure out how to get what you want for this year and beyond, I hope this helps. Just start by thinking, “what do I have?”

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Best wishes!!!