So listen, I’m sure I am not the only person that routinely gets that one dreaded question from well meaning family members and friends. You know the question I’m talking about, right? Surely you do. You know, “why would you eat that knowing it would make you sick?” Another version, “why would you push yourself so hard without resting knowing it would make you sick?” While the wording may vary, the real message behind the words remain the same. The message, loosely translated, “why do you do things to make yourself sicker than you already are?”
The translated message seems pretty harsh, huh? Well, it is…though it likely wasn’t intended to be. I don’t know about you, but it REALLY grinds my gears when people ask me questions like that. Don’t get me wrong, I really do appreciate my family and friend’s concern about my well being. But, on behalf of people everywhere that battle with chronic illness and pain, it’s time for a heart to heart. Now, while I can only speak for myself, I think most people in my same situation would agree with what I am about to type. Here goes. In the absence of mental illness, no one will EVER be more invested in my well being than I am. Said another way and broader to capture more people, in the absence of mental illness, you will never be more invested in the well being of a person battling chronic illness and pain, than the person themself. If you still are not picking up what I’m putting down, let me give you some more background.
Something in our society has made us, (I include myself because I am guilty of this as well), believe that we know what is best for those around us. Friends, this is a dangerous, insulting, rude, and ridiculous mindset to have. In your effort to help and care for those around you, you MUST fight the urge to take on what I call the “paternalistic I know what’s better for your health persona.” See, as you already know, with chronic illness and pain there is more than what meets the eye. So along with that, what may look like a woman pushing herself beyond reasonable limits, for example, may be a woman making a conscious decision to enjoy a day of reduced pain because she doesn’t know if she will ever have another one again on this side of the dirt. BOOM!!! I sense that minds around the world are being blown left and right. Now, I know, I know, what you just read is hard to imagine, but I assure you it’s true.
See, contrary to popular belief, people that battle chronic illness and pain don’t automatically lose their mind and sense of self preservation. We, yep I include myself, we, are still very much capable of determining what is in our best interest. So, what may look like a failure or inability to set reasonable limits, may be a conscious and calculated decision. The take away, start a discussion rather than an assumption.
I am quite sure you can sense the agitation behind my words. Well friends, this is a conversation I have to constantly have…and it’s exhausting. Frankly, I am fresh out of nice responses on this subject. So, when I am asked the question “why wouldn’t you rest when you know you will get sick” or something similar, I have developed a response. My response, “additional pain to someone battling chronic pain is NOTHING, especially if enduring that additional pain means I actually get to enjoy a little bitty piece of life.” Loose translation, additional pain to someone who’s pain is already at a 11 on a 10 point scale, is nothing! Mind blowing, right? Well, hold on to your hats and hair because I am not done. See, I am sure it is hard to imagine a life where you have to conserve energy for weeks just to attend a two hour event, or live in constant pain that leaves you unable to walk, care for yourself, or work. But, that is everyday life for MILLIONS, yes MILLIONS of people.
Every time I see my doctor I am asked “what is your pain on a scale of 1 to 10”. My answer, 11. Yes, my pain is ALWAYS at an 11. Now, I know some of you are thinking “um, if the scale stops at 10, it is not possible to have pain that registers at 11.” Well, to you, I say “JUMP OUT A 1OTH FLOOR WINDOW, LAND FACE DOWN ON THE CONCRETE AND SURVIVE BUT BRAKE EVERY BONE IN YOUR BODY EXCEPT YOUR PINKY, AND LAND ON BROKEN GLASS AS YOUR BODY MEETS THE CONCRETE. Then, tell me what your pain level is on a scale of 1 to 10”. I assure you no one answering that question will say a 10.
Here’s my thing, people always seem to get agitated when a person rates their pain higher than the scale goes, but no one ever gets upset about being asked to use a stupid imaginary scale to rate real pain. IT’S AN IMAGINARY SCALE PEOPLE!!! I have searched high and low, and could not find a pain scale of 1 to 10 available for purchase anywhere. I’ve looked for this thing at stores, doctor’s offices, and could not find one anywhere. I periodically run into a nice little picture with faces to demonstrate pain, but have found nothing that can truly assess a person’s internal pain. My conclusion, which I have already shared, THE SCALE IS IMAGINARY. But, I digress.
Given that I, like millions of other people, CONSTANTLY live with a pain off the pain scale, any day that my pain actually is on the scale will be a day spent doing every single thing I have missed. After 30 plus years of living with horrible pain, I have learned that even if I do everything the doctors tell me to do, my pain will return at some point. So, a day of reduced pain should be spent enjoying life, in my own way, because I never know when I will have that opportunity again. So, that may be a day I eat hot cheese popcorn because I have been without popcorn for over 5 years, or a day where I go to the mall and just walk around because I have been unable to do that for months. I may get up and cook breakfast and dinner for my family because they have spent the last 8-10 months eating quick meals or take out. But, as the support system, I simply need you to recognize what’s happening and let me be the keeper of my limits.
Support systems, please don’t take this and think it means to stop caring. NO, this should motivate you to start conversations with those around you living with chronic illness pain. Rather than singlehandedly trying to determine what your loved ones and friends need, ask them. Also, rather than sitting in judgment and condemning them for “doing things that make them sick”, help them celebrate the reduced day, minute, or hour of pain.