| I admit it: I used to think the whole "fibromyalgia | | | | 7. Put it in terms anyone can understand. Sometimes |
| controversy" itself was manufactured. Even though I | | | | doubts are simply masks for a lack of information or |
| was diagnosed with this condition over ten years | | | | understanding. When someone says "Well, everyone |
| ago, I simply had never had the misfortune of having | | | | hurts after a certain age -- it's just part of getting |
| to convince someone that this is a real condition. | | | | older!" respond with something like this: "Sure, aches |
| Blessed as I was in this respect, it closed my eyes to | | | | and pains are part of getting older. What I have is a |
| the suffering of others with fibromyalgia, eyes that | | | | good bit more complicated than that, though. You've |
| were opened gradually, beginning with an outrageous | | | | had the flu before, right? Fibromyalgia is like that -- |
| piece in the New York Times two years ago, and | | | | that horrible all-over body pain you get in the |
| culminating recently in a spurt of anti-fibromyalgia | | | | beginning with the fever, except it doesn't go away, |
| messages and stories. Then, when I began The | | | | and sometimes it even gets worse during a flare-up." |
| Tramadol Diaries (my blog and website about | | | | Most people have shared that experience of having |
| experiences with chronic pain, including fibromyalgia | | | | the flu, so using it as a common point of reference |
| and other conditions) I began to hear many stories | | | | helps communicate how serious fibromyalgia is. |
| from other fibromyalgia patients from across the | | | | 8. Point out inconsistencies. It makes no sense to |
| country, some of them sad, a few of them | | | | doubt the existence of an illness simply because we |
| downright hair-raising and blood-boiling. | | | | do not yet fully understand it. Nor is it logical to |
| These stories and others, together with the skeptical | | | | disbelieve someone who reports widespread chronic |
| messages being published by the media, prompted | | | | pain, without some evidence that the person is prone |
| me to consider this issue from a practical perspective: | | | | to prevaricating or is a habitual drug abuser. Simply |
| how do you deal effectively with skeptics who think | | | | because an individual does not appear to be ill does |
| your disease is "all in your head"? And what do you | | | | not mean that the person is not ill -- many cancer |
| do when the skeptic is your own doctor? Although | | | | patients appear to be fine in the earlier stages of |
| I've been fortunate not to have this particular | | | | their disease. |
| experience myself, I have spoken and communicated | | | | 9. Put the doubter in your shoes. "Can you imagine |
| with dozens of other fibromyalgia patients who have, | | | | how you'd feel if you were in terrible pain but |
| and their collective wisdom is reflected in the | | | | someone didn't believe you really hurt at all?" Will it |
| following ten tips. | | | | change the doubter's mind? Again, probably not -- but |
| 1. Don't lose your cool. Although it's completely | | | | it may well convince him to keep quiet, at least |
| understandable to feel angry at having your illness | | | | around you. Sometimes, that's the best you can |
| questioned, try not to take it personally. The other | | | | expect. |
| person's doubts say nothing about you, although they | | | | 10. Use logic and Latin: post hoc, ergo propter hoc. |
| may say loads about the doubter! | | | | This response -- literally, "after it, therefore because |
| 2. Educate -- don't lecture. While it's fine, even | | | | of it" - is a good response for those who believe "it's |
| admirable, to try to educate a doubting Thomas, | | | | all in your head" -- a response to mental stress. In |
| take pains to ensure the information you provide | | | | other words, just because your symptoms appeared |
| doesn't sound condescending or arrogant in tone. Try | | | | after some traumatic event or great stress, that |
| to keep your voice neutral, and the information you | | | | does not prove a causal relationship. Another logical |
| share factual in nature. | | | | rebuttal, for those who rely on the high prevalence |
| 3. Turn the question back on the questioner. | | | | of depression among fibromyalgia patients, is this: |
| Depending on how the skepticism is phrased, it may | | | | "Don't you think you might be a little depressed after |
| be more useful to ramp up the response a bit and | | | | five years of intense pain, too?" In other words, |
| make it personal. Ask "What in our relationship | | | | while there may be a causal link, it's much more likely |
| together makes you think I would pretend to have a | | | | that it runs the other way -- the fibromyalgia caused |
| serious medical problem? What have I ever done to | | | | the depression, not the other way around.W |
| give you the impression I would do such a thing?" | | | | What if the skeptical person happens to be a |
| This approach is best reserved for close friends and | | | | treating physician? Here you have a choice to make. |
| family members, but a word of warning is in order: | | | | If the physician is treating a seconadary condition, |
| Don't ask the question if you think you might not like | | | | ask yourself and your primary doctor whether the |
| the answer! | | | | specialist's attitudes are likely to have negative |
| 4. Use humor -- but use it carefully. A response such | | | | effects on your care. Will she disregard certain crucial |
| as "Oh, yes, sure, I'm just imagining the whole thing. | | | | realities about your condition because of her |
| Now if I can just imagine a cure, I should be fine, | | | | skepticism? Is her doubt likely to cause you greater |
| right?" might deflect a tense situation, but it does | | | | stress (more likely if you'll have to work with her |
| nothing to solve the underlying problem. Additionally, a | | | | frequently than if this is a once a year visit)? |
| humorous tone can be taken by some as a sign that | | | | If the likelihood of negative impact on your overall |
| it's perfectly all right with you to treat your illness | | | | treatment program is minimal, you may elect to |
| lightly -- which may or may not always be the case. | | | | simply continue seeing this physician and just roll your |
| 5. Arm yourself with facts. The best defense is a | | | | eyes at her if she brings up her skepticism in the |
| good offense, and the best offense is a factual | | | | future. A better approach, however, is to let her |
| rebuttal. Keep up with the latest studies and | | | | know upfront you equate her attitude with |
| information, and offer it to the skeptic with a | | | | disrespect, and you don't tolerate disrespect from |
| straightforward tone of voice. Knowing that scans | | | | anyone, thus it's best for her to simply avoid the |
| repeatedly show biological and chemical differences in | | | | subject altogether. |
| the fibromyalgia patient's brain and neurological | | | | If, however, the physician is a primary provider, or if |
| responses might well cause a doubter to think twice | | | | you will need to see her often, then it's to your |
| about his opinion. | | | | benefit to seek out another physician. Although you |
| 6. Express shock. "I'm surprised at you," or some | | | | can try to educate her, it's highly unlikely that she |
| variation thereof, will certainly go a long way to | | | | would consider changing her perspective, unless her |
| communicating that it is NOT permissible to dismiss | | | | skepticism is truly based on a lack of information, and |
| your condition as a made-up disease, or to treat you | | | | she is also one of those rare individuals who is willing |
| as nothing more than a hypochondriac. This type of | | | | to change her mind when presented with sufficient |
| response is best reserved for coworkers and friends, | | | | evidence to the contrary. And life is simply too short |
| but can also be quite effective with physicians, since | | | | to condemn yourself to life with a doctor who's so |
| it plays on their pride in their native intelligence. | | | | poorly equipped to help you. |