By: Cheri Mackenzie
My pain on a good day seems more like background noise to me; like the sound of static you hear on the radio when the station won’t come in. The sound is rather annoying, but if your radio was broken and (for metaphoric purposes) you couldn’t turn off the radio, you could still go on about your day. If you did this every day, eventually you would just naturally tune out the noise, and you would still be able to function as normal. That’s how I feel every day! I have just learned to function with the sound of the static in the background. That is my new normal.
My normal or good days are very different from someone without an illness. When you’re not sick or injured, going on about your day is not a big deal. I, on the other hand, have two very frustrating and debilitating diseases, rheumatoidarthritisand fibromyalgia. When I’m not sick, or when I haven’t physically hurt myself, the rheumatoid arthritis causes my immune system to attack my body’s healthy joints. My body creates anti-antibodies that attack the lining of my joints, causing inflammation and damage to the cartilage, as well as the bones themselves. Over time this can cause damage and deformity of the joints, ligaments and bones.
To add insult to injury, my fibromyalgia causes my sympathetic nervous system, or “fight or flight” system, to stay switched to the “on” position more then the “off.” This means that my parasympathetic system, or my “rest and digest system” doesn’t get switched on much. Our bodies need both systems to work properly. When your body is in “rest and digest” it creates more saliva, releases digestive enzymes, slows your heart rate, and relaxes your muscles. These are just a few examples of important things your body does at rest. When you are in “fight or flight,” your heart rate increases, your muscles contract, you stop producing saliva, and your stomach stops most of the functions of digestion. This prepares our body for action, either to fight or to flee. For me, my body tends to stay in the “fight or flight” system. This causes my muscles to stay tense all the time, heart rate to stay active, and my stomach to be unable to properly digest and move food through my digestive tract. This also keeps me from sleeping soundly, and even keeps my brain from entering a proper REM cycle.
My optimistic personality and happy demeanour sometime makes the people around me forget that I live in pain 24 hours a day. That on a good day, my body still hurts, that I still have inflammation in my joints; that my pain receptors are always firing. That on my bad days I’m exhausted because I tossed and turned all night, that the muscles in my neck, scalp, and forehead are so tense that my head feels like its in a vice. That my jaw is so tense that the joints of my face scream in pain and the muscles in my jaw feel tense. That walking even just a few feet saps all my strength. That my brain is so foggy I can’t even remember simple words like “water bottle” or “bib.”
It’s on these days that I get crusty, cranky, or even curt with people, and it’s also on these days that I tend to have people look at me and say, “Just smile!” And it’s in these moments that I want to scream at the top of my lungs in order to make people understand just how much agony I’m in! I’m sorry, but just so you know, telling anyone who is in major pain, be it physical, psychological, or emotional, to just “smile” is not only ignorant, but cruel.
What people don’t seem to realize is that they are basically telling that person what they feel isn’t relevant, and that they need to get over themselves. That the pain they feel physically, emotionally, or mentally is all in their head. That would be like telling someone who broke their leg to walk it off, that they just need to stretch their muscles a little bit!
I’m sure some people are probably reading this and thinking that I’m exaggerating a little bit, or taking things out of context. I’m sure some even feel like they had nothing but good intentions. “But that’s not what I meant at all! I just want them to smile in hopes that it might brighten their day a little! A little positive thinking might make their day seem a little less defeating.” Telling someone who is in constant pain all the time to just smile is like slapping someone (who has had a root canal with no drugs) in the face.
Let me be very blunt: Please stop telling people who are in pain to smile. As someone who is in pain daily I can honestly tell you that asking me to smile doesn’t help! If anything, it just makes me feel worse!
Ever hear the saying “Actions speak louder then words?” It’s the truth! If you really want to help someone who is in pain, ask them if they need any help! Offer them assistance! If they are sweeping, ask if they want you to take over. Writing a document? Ask if they need help. Offer for them to dictate, while you write it down. Do something that really helps them!
Picture this scenario. You are cooking in the kitchen. Your spouse comes in and says, “Did you add the spices? Don’t forget the spices! Where are the onions? You didn’t add the onions yet? The meat will cook too fast and the onions won’t have time to cook properly! Ugh! Just let me do it!” Anyone feel like screaming at their spouse to get out of the kitchen yet? Would you feel like your spouse doesn’t have faith in your cooking skills, or that he simply doesn’t think you can do it!? That is how someone might feel if you just took over a task from them instead of asking if they need help. We are already internally struggling with feeling like we are useless, so please don’t add insult to injury.
Say, “How are you feeling? Are you OK? Do you need some help?” Some people might honestly say no! That’s OK! Just asking how someone is feeling, and offering your assistance can help. They may still want to finish the task on their own, but just knowing you care and are there to support them in any way you can, really does help. Sometimes just knowing someone is willing to help if I need it will make me feel a little brighter.