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