Last week, I challenged Facebook friends to describe their chronic illness in 3 words. Many of these people had Rheumatoid Arthritis and similar conditions, and many of them used words such as “frustrating, isolating, ugly, lonely, indescribable, difficult, invisible, painful, hurting, tiring, depressing, agonizing, expensive, challenging, life-changing, annoying, misunderstood, tearful, excruciating, exhausting, consuming, limiting” and so on. I then added a twist, and asked them to then use words that were either positive or neutral to describe their conditions. Out of about 47 responses, only 4 or so were able to do this.
It isn’t easy to think of neutral let alone positive ways to describe our pain or our sickness. They are negative things, and so, how could you look at them in any way but negatively? Some words that folks used that were positive or neutral in regards to their illness were: “alive” (as in, we have this condition but are still alive), “strengthening” (this makes us stronger people despite the pain) and “normal” (it isn’t normal to anyone else, but it is normal to us!) Others were: “advocating, motivating, unique, searching, real, and hopeful.”
Now, we’ve all heard that positive thoughts can actually help increase our overall wellness, and may even release endorphins that serve as natural pain relievers. However, there’s also evidence to suggest that word choice when describing our conditions can play a role in our perception of pain, as well.
One study, shown in a Summer 2010 issue of Health Monitor magazine, claimed that by using negative words to describe our pain, that we are actually tricking our body into feeling that way. Patients who used words like “excruciating” to describe pain that others would simply say was “painful” saw a dramatic increase in their pain after using the more “severe” word. So when telling others of your pain, keep in mind that your word choice could actually be affecting how you feel. I know that we want to share with others that RA can be excruciating – so when you need to do so to educate them, please do! But, on a daily basis, let’s really put our pain into perspective. Is it excruciating today or just painful? Is it so bad that you want to die, or is it just a severe pain that will soon pass? Changing the way we think and talk about our illness could become beneficial to our health.
Another interesting study done last year and published in TIME Magazine said that swearing during bouts of brief, acute pain can diminish that sensation of pain. Not that those of us who suffer chronic pain should limp around with potty mouths, but studies showed that those who, for example, stubbed their toe, and were able to let out an expletive were more able to tolerate the pain than those who were instructed to keep quiet. This would suggest to me that, in the big picture, it is healthier to talk about our pain than hide it – and, when necessary, let out a 4-letter word if it makes us feel any better.
The point here is that we need to be educated on how to talk about our pain. Yes, if someone shut our finger in the door, a yelp accompanied with a curse word would be acceptable (depending on our company and the place) and may help us feel better in that moment. But, we also have to recognize that on a daily basis, the way that we look at and speak about our pain may very well have an adverse reaction on how we feel our pain, or, at the very least, how we perceive our pain. Not recognizing the proper words to use may be roadblocks to our wellness and may actually exacerbate symptoms.
Studies have shown that meditation and repeating positive affirmations (i.e. “I AM going to conquer my pain today. Today, I’m going to feel pretty good”) can actually help us look at our chronic illness in a more positive light and could even eventually lessen our perceptions of pain. When we are in that mindset, the way that our brain processes or perceives pain is changed – hopefully, for the better. Knowing the proper words to use in pain description is also crucial when talking with your doctor. This is one conversation that definitely could affect our physical health because of proper diagnosis and symptom management. The doctor’s office is not the place to exaggerate or to hold back. When visiting with your doctor, you need to be as up front and honest as possible. If you hide things, they could miss a diagnosis – or a treatment that may help you! If you exaggerate, you may end up with too strong a treatment that could be detrimental to your health or that may limit you even more. Also interesting to note, is that the way in which our doctor describes our condition to us, affects the way we feel about it. If he or she talks about it like it’s the end of the world, we’re going to feel that way. If they are encouraging and positive, we will have a better chance of having a similar outlook!
Notice that I often try to stay away from words such as: disabled, crippled, suffering. These words have negative connotations and that affects not only the way I view myself and my conditions, but also the way that the world views me. I’d rather be called a rheumatoid arthritis survivor instead of a sufferer, or someone “living with” illness, instead of “suffering from” it. I’d rather need some special accommodations or have some slight limitations rather than be called crippled or disabled. I’d rather look on the bright side of things and talk that way, too. Sure, I do talk about my pain. Sometimes, if it is excruciating, I say so. Other times, I may just say that something hurts pretty badly. Other times, still, I won’t say a word and will just keep very quiet (and if *I* don’t want to talk, that’s usually when I’m feeling my worst!) So, needless to say, I still have work to do in this area, too. We all probably do. Sometimes, things are too bad to NOT vent – and we all need to vent, now and then. But, there are also times that I SHOULD let others know exactly how I’m feeling, but don’t. It’s a fine line, but I think with each other’s support we can walk it (or crutch it, or wheel it) together.
I think a good first step is evaluating just how you talk to your doctor. Make sure you are being clear with how you’re describing your symptoms. Maybe prepare a written list the night before will help you not to miss anything. Go over it again in the morning to make sure it is accurate.
Another good idea is to remember to talk about pain, and describe it properly. It is important to talk to those close to us so that they know how we are feeling. Yet, if they aren’t living with a chronic illness, they might not understand, and this “talking” many not seem as satisfying.
So, in addition to talking to loved ones, also be sure to talk to others with chronic illness, whether it is online or in a support group, etc. In this arena, and with this audience, feel free to be a little more “brutally honest” with how you’re feeling, for with this group, you know that they’ll understand the pain you live with – whether you choose to overexaggerate it or play it down! On this note, remember that with talking about pain comes listening. So when you are the listener, be mindful that everyone’s circumstances, situations, diagnoses, tolerances, and lifestyles are different, and that everyone copes differently. Someone may be in a very different place than you, and that’s okay. When playing the role of the listener, try to remember not to be judgmental.
While you’re working on communicating about your illness, take some time to look at a thesaurus. You may find adjectives to describe your pain or illness that are more exact and maybe less depressing than the words you’d normally choose. Who knows – you may find an accurate word that more aptly describes what you are dealing with – a word that you never even knew existed!
Lastly, remember when talking about your condition that, like anything, it’s all about balance. If it’s all you talk about, it’s all that you will become. Your identity will be your sickness and not the whole person that you are. If you don’t talk about it enough, you will have negative consequences from holding it all inside. Finding this balance will help you be a better you! And remember, if someone runs over your toes or elbows you in your nose, you have permission to swear! (Well, according to the medical community, at least!)
How do YOU describe your illness?
Thanks for reading!
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Fantastic Blog post, I really struggle to communicate my pain to my consultant and have given up.
I agree that if demonise the pain it can make us feel more in pain, it’s not something people would admit to as it almost makes it sound as if the pain is psychological but we know it’s not!
Keep up the good work
This is one of my big stumbling blocks! I was brought up to ‘soldier through’ pain, by my mother, whose first experience of medical intervention was cataract removals in her 80s [apart from having 4 children LOL]. SO my immediate reaction when someone asks about my condition is ‘not too bad’ – even when my rheumy asks. I have to consciously bite my tongue before I can answer honestly that my pain is level 6, 7 or 8. But I have found that keeping a pain diary, for my eyes only, allows me to be honest when I record my pain each day. Then I have that knowledge in the front of my mind when I answer the dr’s question, and I can answer him honestly.
But I still say ‘not too bad’ to casual inquiries!
Well said! Thank you! Love reading your work.