by Jeff Hagan
(Tacoma, WA, USA)
1 Thess. 5:11, “So encourage each other, and build each other up...”
Hebrews 3:13, “But encourage one another day after day...”
Living with fibromyalgia means pain is relentless and pain is constant. Physical pain is a part of me just as much as my hair and eye colors. I was diagnosed with fibromyalgia back around 1994 and I've been limping and faking my way through life ever since. For those who don't have fibromyalgia, they can't comprehend what it's like to live with the immobilizing pain this illness delivers on a daily basis, and this usually leads to misunderstandings and hurtful, unsympathetic comments.
Before you open your mouth and insert foot, saying something insensitive, regardless of your intentions, stop and think about how your words might be perceived once they come out. Evaluate them and make sure they are positive and supportive, or just be quiet! Family members, friends, co-workers, and even strangers and doctors have all been known to make hurtful comments about fibromyalgia. If you realize you're about to say[ one of the following comments, then I say again, just be quiet instead!
Things Not To Say:
One – Do NOT say, “Fibromyalgia isn't real” or “It's all in your head.” This is highly insulting and extremely insensitive, and it has the very real potential to ruin a relationship. Fibromyalgia is very real and is a recognized neurological and physiological disorder. The Mayo Clinic, the Center For Disease Control And Prevention, and any physician who is not a quack recognizes the legitimacy of fibromyalgia. The last thing we need to hear, especially from friends and family, is doubt about whether or not what we are actually experiencing every single day is real.
Two – Do NOT say, “But you don't look sick.” Why don't you tell me how you think a sick person is supposed to look and I'll try and do a better job of looking like that for you. Give me a break. There is a number of chronic, invisible illnesses and disabilities.
Three – Do NOT say, “You just need more rest.” People with fibromyalgia often run into two extremes in this area: First, they already get plenty of rest. In fact, the constant pain is so exhausting that one often reaches a point they can no longer keep their eyes open. Second, the pain repeatedly interrupts their sleep and “more rest” is not possible. Either way, it's a simplistic, dismissive comment.
Four – Do NOT say, “You just need more exercise.” Chances are we have exercised and guess what? It made us feel worse because the pain is so bad. I think 95 percent of the population could use more exercise anyway. We know exercise is important, we're not ignorant. However, it's extremely hard to exercise when you can barely make it through a day. After I take a shower I have so much pain and fatigue in my shoulder joints and back that the last thing I can imagine doing is exercise. With that said, stretching, gentle Tai Chi, or soft aquatic activity might be appropriate in some cases. Don't attempt to know what is best for them, because you don't.
Five – Do NOT say, “You can do more than you are” or “I'm sure you can do it.” Buzzzz! Wrong comment! How do you know if they can do more? How do you know they can do “it?” People with fibromyalgia need to move softly and slowly. Any attempted increase in activity needs to be done at a snail's pace. We have become very astute at reading our own bodies. We know when it's time for us to stop, we know when it's time for us to rest. If we don't “read” or “listen” to our bodies, we will surely pay for it the next day. We will wake up the next morning in worse pain feeling as though we have been run over by a semi-truck. Trust that we know what our bodies can handle. We especially know what our bodies can handle more than you do.
Six – Do NOT say, “Well, I have so and so” or “If you only knew how much I hurt.” Don't tell your own story about your illnesses or health in an attempt to minimize their condition or to try and top their ailments with your own. Unless it is requested, don't use your health issues as a comparison or gauge for theirs.
Seven – Do NOT say, “You need to get out more” or “You always cancel plans.” These comments are not beneficial. We don't choose to be limited in what we do. Nobody chooses this lifestyle. And, don't take it personally if we have to cancel plans. If we cancel it's for a reason, we're not just being inconsiderate. Most frequently it's because we are experiencing pain or are having what is called a “flare up” of our symptoms. It's not because of how we feel about you (unless maybe you're one of those who says the ignorant comments on this list). If you get canceled on just show empathy and understanding.
Eight – Do NOT say, “Well, you use to be able to _______.” Don't compare our present lifestyle, energy level, or habits with how they use to be. Again, no one would choose to have an illness that causes so much pain, fatigue, and exhaustion and completely alters your entire life. I'd give almost anything to be able to still practice martial arts and to still do bodybuilding. Making comparisons to our “before and after” only makes us feel worse.
Nine – Do NOT say, “Everyone gets tired.” Sure, it's a true statement, but fibromyalgia tired is not the same as normal, healthy tired. A person with fibromyalgia can sleep a full 7, 8, 9, or even 10 hours and they will still wake up groggy and feel as if they got no sleep at all.
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