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“You spend too much time thinking about your illness. If you just got out of the house more, I am sure you’d feel so much better.”

Most of us who live with a chronic illness have heard these words at one time of another. And whether we’ve reluctantly taken the advice of this well-meaning person, or have passed the comment off with a brush of our hand, the sting of her inability to understand the depth of our life-altering pain makes us want to run screaming—or fall into a heap of tears.

Michael Stein, M.D., author of “The Lonely Patient: How We Experience Illness” writes, “When a patient speaks of being ‘in pain,’ it is not unlike a felon speaking of being ‘in prison.’ And like many who are sentenced, the more a patient tries to work his way out, the further he works himself in. All that is left is pain, confusion, and a feeling that the body has betrayed him. The patient has trusted his body up to that point, taken good care of it. Why has it turned on him? This sense of betrayal is too enormous to manage—it swamps the patient causing him to feel useless” (page 66).

Read this part again: “It swamps the patient.” And this is where the conflict begins.

pain

The intensity of chronic pain is often minimized by those who have yet to experience it. Sure, compared to physical recovery our brother had last year after a car collision, perhaps our fibromyalgia may seem pretty minimal to our family. But as I’ve often said, “Whatever happens under your roof effects your family.”

Using distraction as a tool to lessen pain has probably been around since the beginning of time when a grandchild came to grandpa with a scraped knee, only to have him stomp on his foot and say, “There! Now you’ve forgotten about your knee, right?” Ironically, I’ve used distraction from my own pain of rheumatoid arthritis and fibromyalgia to build a non-profit organization that serves the chronically ill in a Christian environment. Through the midnight hours, the needs of the organization have serves as a tool of distraction from the pain itself, even when the work I am doing directly relates to pain itself.

The holistic treatment of pain has always used tools of distraction from sounds of nature to scents and lighting. But now even medical world is joining in through the most unlikely of places—video games, which can distract patients from the pain at least enough to give them a “break” if only momentarily. For example, SnowWorld is the first virtual world custom-designed for burn patients. Patients wear a virtual reality (VR) helmet, which blocks their view of the burn wound care, and they float through an icy 3-D canyon during severe burn wound care or physical therapy sessions. They get to shoot snowballs at snowmen, igloos, and robots and even penguins (which just turn upside down with a quack. (Hoffman, Patterson, et al., 2004; Hoffman, Sharar, et al., 2004).

Distraction does have its place in the treatment of pain. But as far as the theory behind, “Just think about other things or go take a walk and it will all go away.”—not! As we enter into the seasons of family get-togethers, which include those little corner-of-the-room moments of “Can I just give you a little advice?” what’s someone with illness to do?

Here are 5 ways to gracefully avoid conflict when loved ones share their best advice on distraction techniques:

1)Be prepared to talk about something other than your illness. If you can only quote from medical journals or the latest Arthritis Today magazine, go pick up a copy of Newsweek, USA Today or even People magazine before the family event. You can’t say “I have a life” if your main source of world events comes from your illness support group.

2) Take their advice—and ask them for a Playstation 3 for Christmas. If they start talking about how you need to do some other things to get rid of the pain, tell them about the study that showed playing sports and fighting video games produced a dramatic level of pain distraction: "Effects of Video Game Play Types on Pain Threshold and Tolerance.” Make a Christmas list.

3) Smile politely. Seriously, we all have family members who have our best interests at heart and who will spend their lifetime trying to find the cure for our disease. Be grateful for his intentions and just say, “I appreciate your concern.” Play nice. Some day when he is going through a difficult time—and are weary of all the advice, you can give them a call and just listen—and he will realize how hard it was for you to have been gracious all those years.

4) Ask her about her own life. If your sister-in-law has you back into a corner with a box full of news clippings and vitamins, say, “Thanks for taking the time to do this.” Put down the box and say, “Let’s grab a drink and go talk. I’m dying to hear about what your kids are up to these days.” Chances are you aren’t her only “project” and she will gladly talk about the others.

5) Get a life. . . or at least start one. As Dr. Stein wrote, “Pain swamps the patient.” On many days it can be nearly impossible to see the light. But today is one of those days it will be to your benefit to distract yourself. For example, buy the simplest digital camera you can operate and take photos for everyone to email them later. Grab the video camera and one of the kids and let him start interviewing people or have people share a corny joke for the camera. Be reasonable with your limitations and don’t do this for three hours. But allow people to see you participating and not sitting on the sidelines, because they will be much more likely to whisper, “She just seems to sit around feeling so sorry for herself” and then try to figure out what advice to offer.

While all of these tips may seem like you are not being “true to yourself” or honestly sharing about what you are going through, remind yourself that you are not your illness. Be the person you want to be, not the person your body tries to demand it to be. Between weather changes, stress, travel and good old Murphy’s Law, the odds are that you will wake up on holiday mornings feeling worse that usual. Don’t let that define your day, this experience in your life, or the memories you and others will have of it. Instead, fight to allow at least some piece of who you still are slip through and just participate. Make adjustments: play one board game instead of six, clear a few plates, not the whole table. Be the cheerleader or photographer instead the of linebacker in the traditional family football game. But be there! Body, but especially soul.



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