• Stephanie Speaks

6 Things you should definately NOT say to someone dealing with chronic pain!

Updated: Sep 6, 2019

I have spent as long as I can remember in daily chronic pain. From constant throbbing head pain due to water around the brain, to constant knee and back pain due to #hypermobility which drastically fluctuates with intensity. I’ve learned to not only cope with the balancing act of the physical pain but also the acceptance act and emotional pain that often accompanies it!


Ok, I get it - you find yourself in unknown territory when a friend or family member unexpectedly tells you how their chronic pain impacts them. I’m sure most people, really don’t intend to, but I’ve found over the past few years a huge collection of particularly unhelpful clichés, when you find yourself in this situation.


I never take a single pain free moment granted. For this reason, I completely understand other people who are experiencing chronic pain of some form. Living this way is difficult, but a healthy way of life along with some cultural tweaks can go a long way to making the experience less uncomfortable for everyone!


Bearing in mind that almost 70% of people are expected to develop a chronic illness in the UK before they hit retirement (yes, I do research too!) I’ve conveniently compiled them into list of what to not say!


Here’s the most annoying things to say to people in chronic pain;


1. "Just drink more water."


Oh. My. Word. How many times I’ve been told to sip water? I am not a fish. Yes, dehydration can cause a pain – no I have not lived in a constant state of thirst for the past decade! P.S. If you said just drink more wine we'd be talkin'!













2. "But you don't look sick."


Welcome to the world of invisible illnesses. I don't need a wheelchair or a permanent sign on our head that reads “sick”. Sometimes the alternative of lying alone feeling everything physical is less appealing than pushing through and taking fresh air after spending 3 days in bed doing nothing at all.











3. "It's all in your head." (Pardon the pun if you have a form of hydrocephalus like me!)


I am firm believer in the value of nourishing your mind-body-soul connection and it’s my love for meditation and yoga that keeps me sane at my worst, however, you can have all the positive thoughts in the world and you are dealing with very real, medical physical symptoms that even professionals struggle to comprehend sometimes!













4. "Just don't think about it."


Ok. There are days that are better and days that are worse, but for the most part chronic pain is Constant. It is not something that we just stop thinking about as it takes a huge personality shift to accept parts of your ability that are now lost and accept new challenges that are appearing every step along the way.











5. "But you look so great."


I personally hear this a lot, since the consultants have pressed me to lose so much weight since diagnosis. Just because a person looks good in your opinion, look good today or was able to hide behind some good makeup, it doesn't mean they are not in pain. Just because I can stand and today, it doesn't predict that it may have been the last time I can wash my hair for the next fortnight. This brings new meaning to the term “Beauty is Pain!













Just Selma Blair dominating her MS... nothing to see here but a warrior!


6. "You should stop doing X, Y or Z ." See point #2. I have either never done this, have stopped and it didn't help or trying hard to stop (but it is not so easy) what you are suggesting. Every case, and everybody is different. Refrain from the loose comparisons. Unsolicited and unprofessional advice can do more harm than good too. The truth is; if a #spoonie is dealing with endless medications, therapies and appointment to try to manage their condition, and they are still managing to try some form of entertainment or hobby they’ve always wanted to do, then they should be FULLY supported as it may of taken them every single ounce of energy and last breath just to smile that day.





I want you to be confident in all your future conversations with chronic pain warriors, or #spoonie as some might identify! An open dialogue always wins in every situation <3 A simple and east to remember response to all these comments would look something like this….


I am here for you if you need me. I care about you so much. I am here to listen whenever you want. I love you. Remember, a smile and a hug can do a lot more than any word you could say.


What things have you found to open positive communication in these circumstances? Leave a comment below to see what others think :)

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