CHRONIC PAIN IS REAL. BE SUPPORTIVE OR BE QUIET!

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Multitudes of us suffer from chronic pain and we repeatedly have to deal with ill-informed, ignorant comments from all kinds of sources. It hurst most when it comes from family and friends so I provided a list of things that are not wise to say to someone suffering from chronic pain and/or fibromyalgia.

Submitted: September 10, 2014

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Submitted: September 10, 2014

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(Be supportive or be quiet: fibromyalgia and chronic pain)

 

Introduction:

Living with fibromyalgia means pain is relentless and pain is a 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 suppose 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 snails 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 ran 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 personal 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 say 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 afters” 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.

 

Ten – Do NOT say, “It must be nice not having to go to work.” Oh really? Yeah, you're right, feeling unproductive and useless is far better than feeling productive and useful. Get a grip! Being home all of the time can be excruciatingly boring, and again, it's not as if we have a choice. If I could work, I'd be working. I would much rather have some income than be dirt poor, but what can I (we) do?

 

Eleven – Do NOT say, “It's just part of getting older” or “Aches and pains are normal.” To start, I was diagnosed in my mid-20's, that's not very old. Children have fibromyalgia. Next, there is nothing “normal” about the aches and pain people with fibromyalgia experience.

 

Twelve – Do NOT say, “Boy, I wish I had time to nap.” The majority of people seem to think we enjoy having to sleep at times during the day. Again, I repeat, we do not choose this and it's hurtful when you speak to us as if we do.

 

Thirteen – Do NOT say, “You're just depressed.” First, it is inaccurate to describe depressed as “just depressed,” it's so much more than that. Never minimize the symptoms one may suffer in their depression regardless if it is connected to their fibromyalgia or not. Second, depression can be either a response to a chronic illness or a main symptom. In my case depression came on much later than my fibromyalgia. My fibromyalgia condition preceded my depression by several years.

 

Fourteen – Do NOT say, “Other people are worse off than you.” Really? Thanks for the update genius because I had no idea. I know there are people worse off than me. People die from cancer every day. People may have fibromyalgia more severe than I do. Suffering and pain are subjective experiences. One's ability to tolerate pain is not a litmus test for another persons toleration level. It can't be measured. We have no desire to enter a “Who Has The Worst Pain” competition. We should not feel guilty, or be made to feel guilty, because someone will always have something worse than we do. This is my body, my pain, and the only ones who know it's extent are me and God.

 

Fifteen – Do NOT say, “You need to change your diet.” First of all, the Mayo Clinic recently put out an article stating there is actually no concrete, scientific connections from the commonly claimed sources – carbonated beverages, sugar, artificial sweetener, refined flour, etc. - to fibromyalgia. Not that diet isn't important, there is just no evidence to what foods may contribute to fibromyalgia (if any). Second, when this is said the implication that accompanies it is that chronic illness is somehow our fault, that eating the wrong diet caused it. Three, there are two extremes with this topic. On one end of the spectrum are those who often feel too sick to eat because of fibromyalgia or the medicines that have to be taken for it. On the other end of the spectrum the taste of food for some is the only time they enjoy anything. Of course we need to try and avoid both extremes, but these are results of the illness not causes. When I was diagnosed with fibromyalgia I was in my physical prime and my diet had absolutely nothing to do with it.

 

Sixteen – Do NOT say, “It's just stress.” Okay, then why doesn't everyone who experiences stress become debilitated from pain like I do and have to take prescription drugs to simply make it through the day? Indeed it is stressful, but stress is not the cause.

 

Seventeen – Do NOT say, “Should you be taking all of those medications?” I'm sorry, but when did you get your medical degree?

 

Eighteen – Do NOT say, “Those medications are very addictive.” How about, I'm following specific orders from a medical professional who prescribed it to me? If I need something to function then I need it to function, it's that simple. Like the doctor who finally convinced me to take medicine for my condition said, “If you need medicine to control diabetes you'd take it. If you need medicine to help liver function you'd take it. Well, you need medicine to function due to the condition you have.” And if it happens to be a doctor telling you what your on can be addictive, then ask him if he'd change bodies with you then give you some advice about medication.

 

Nineteen – Do NOT say, “You just need to drink more water.” I think nearly everyone could stand to drink more water. Don't be so nonchalant, dismissive, and simplistic. Drinking more water is important, but it's not going to make my fibromyalgia disappear.

 

Twenty – Do NOT say, “You just need to be strong.” People with chronic pain and illnesses have to be strong every minute of every hour of every day. Often times we have been wearing a “mask” to appear normal long before we reach the point where our illness takes control of every aspect of our lives. We are already strong because we had to be to make it as far as we have. We don't need to be told to be strong when we already are strong. Besides, telling someone to be strong implies that you think they haven't been up to that point.

 

Conclusion:

Every day is different and has its own challenges. Don't assume that just because your family member, friend, co-worker, or loved one seemed to be doing okay yesterday (or even earlier the same day), means they feel the same today (or later that same day). There are only a few things predictable regarding fibromyalgia, and the number one thing is that it is unpredictable.

 

So, it's time to start being part of the solution and stop being part of the problem. We're already suffering enough without your thoughtless comments.

 


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