1. I think I have that too.

2. My sister-in-law has fibromyalgia and she’s still working. She says it helps to take her mind off the pain.

3. But you look okay.

4. Is that a real disease.

5. Maybe you just need some B vitamins.

6. Do you have any percocet? I could sure use one right now.

7. Well, we all start to ache when we get older.

8. Can you hold this box for me? I can’t find my keys.

9. Does this mean you won’t live as long.

10. Well, just try to look on the bright side.

Linda Meilink goes on to qualify each thing on her list, and these clearly come from her own personal experience. But it got me to thinking. What has been said to me over the years that has just made me cringe? So here is my list.

1. Did you see that commercial for the new drug that cures Fibromyalgia? – Now this drives me nuts because, A) It does not CURE Fibromyalgia. It is an anti-seizure medicine which has proven to reduce pain in FM patients. B) Pain is just one of the symptoms of FM and it does nothing to address the others – fatigue, fibrofog, dizziness, sleep disorders, etc. C) It has its own list of side affects that some of us would rather not expose ourselves to, and D) I chose not to take prescription drugs to treat my FM.

2. Fibromyalgia is what they diagnose you with when they are not sure what is wrong with you. - ARGH!!! I heard this most recently from someone who was quoting his friend – AND HIS FRIEND IS A DOCTOR! FM is still under-researched and misunderstood, but it is real, and recent testing is going a long way to prove that. Now if everyone in the medical field would just open their mind to the possibility, great progress could be made.

3. If you would just exercise you would feel better. - It is not that simple. Yes, gentle exercise can be beneficial for fibromyalgia, but it can and does cause flare-ups. It is a matter of slowly building up your tolerance, but forgive us if we do not go out of our way to deliberately cause ourselves more pain. It really is a vicious circle. If you knew something you ate would make you healthier, but that you were going to throw up violently each time you ate it, could you?

4. You can’t be here by 10AM, how about 11:30AM? - Uh, no. When I am down, I am down. I will not magically get better in an hour and a half. But thanks for being flexible!

5. Well it is really common. - Okay, so does that mean it should be easier to deal with? Are you equating it to acne or ingrown toenails? I just don’t understand this comment. Pain may be common, but it is still painful. Common does not equal easy to live with. And part of what makes it seem so common is that it is currently being over-diagnosed, but that is for another post.

6. A lot of people are much worse off than you are. - First off, this is absolutely true. I have a lot of fortune in my life – friends, family, etc. But everything is contextual. This is my life, and this is what I struggle to live with everyday. Somedays I manage well, but others I am a total and complete mess. Does that mean that I am being insensitive to my neighbor who has terminal cancer? No, I don’t think so. It simply means I am struggling and could use a little empathy. So reminding me that it could be worse does not make me feel better, it simply makes me feel guilty for indulging in a little self pity.

7. How is your back? - I got this one a lot after I was first diagnosed 11 years ago. The original injury which brought on my FM was to my neck. I had never had issues with my back, and yet numerous people asked me this. Often the same person more than once. Pretty ungrateful of me to not appreciate their interest in my health, but it always confused and frustrated me. This is a much more appropriate question since the accident two years ago. My back is killing me right now!

8. Have you tried acupuncture? - I would love to try acupuncture, but who can afford it? It is not something you can do one time and reap the benefits of it. It is something you need to do repeatedly, and it is costly. I have not always had insurance, and when I have acupuncture/massage is not covered. It is too bad that holistic medicine is for the most part not covered and that it is so expensive.

9. Maybe you are just depressed. - For a lot of patients Fibromyalgia and depression do go hand in hand, and until recently many doctors believed that FM came out of depression, but that is not the case. Many women with FM have never suffered from depression. I have had some pretty low days, but I can honestly say that I have never been clinically depressed. FM has changed my life so dramatically I have had a lot of trouble adjusting and adapting. I have been mad, sad, angry, unreasonable, and a few times I felt close to losing my mind – but tell me, could you be physically tortured and never respond dramatically to it?

10. Silence. - No response is sometimes the worst response. I have had new doctors sit and smile condescendingly at me while I explained to them I have Fibromyalgia. They never say it, but I know they are thinking that it is not real, that what I am experiencing can be explained away, that I am weak, and a hypochondriac. They say a lot by sitting there saying nothing at all and I hate them for it. I hate their close-mindedness and their pre-judgement of me. I can never get past their silence.

So that is my list. What is on your list?

NOTE: My husband thought this was a little edgy and he could tell I was clearly not feeling well when I wrote it. The very nature of the subject tends toward negativity. I hope this is not too abrupt to read but I am choosing not to edit myself.

Have you ever read The Road to Wellville by T.C. Boyle?  If you have not, you should.  It is a wickedly comic novel written by the most entertaining of contemporary American writers.  This whole business with Dr. Whitcomb, and his Lake Tahoe clinic, and his false promises of a cure for Fibromyalgia is reminiscent of it.

The real-life Dr. John Harvey Kellogg is fictionalized into one of the main characters in Boyle’s The Road to Wellville.  You might know Dr. Kellogg from the Corn Flakes you crunch occasionally for breakfast.  Yes, that most famous of breakfast cereals was actually invented by a doctor obsessed with healthful living.  T.C. Boyle’s fictitious story takes place at the Battle Creek Sanitarium, which was a popular health retreat in the late eighteen to mid nineteen hundreds, run under the controlling and obsessive eye of Dr. Kellogg.

In the thirty-one years of his directorship, Dr. Kellogg had transformed the San (…) to the “Temple of Health” it had now become, a place celebrated from coast to coast – and across the great wide weltering Atlantic to London, Paris, Heidelberg and beyond.  Twenty-eight hundred patients annually passed through its portals, and one thousand employees, including twenty fulltime physicians and three hundred nurses and bath attendants, saw to their needs.  Six stories high, with a gleaming lobby half the size of a football field, with four hundred rooms and treatment facilities for a thousand, with elevators, central heating and cooling, indoor swimming pools, and a whole range of therapeutic diversions and wholesome entertainments, the San was the sine qua non of the cure business – luxury hotel, hospital and spa all rolled into one.

 

And the impresario, the overseer, the presiding genius behind it all, was John Harvey Kellogg.  Preaching dietary restraint and the simple life, he eased overweight housewives and dyspeptic businessmen along the path to enlightenment and recovery.  Sever cases – the cancerous, the moribund, the mentally unbalanced and the disfigured – were rejected.  The San’s patients tended to be of a certain class, and they really had no interest in sitting across the dining table from the plebian or the pedestrian or those who had the bad grace to be truly and dangerously ill.  No, they came to the San to see and be seen; to mingle with the celebrated, the rich and the preposterously rich; to think positively, eat wisely and subdue their afflictions with a good long pious round of pampering, abstention and rest.  (Boyle 6-7)

So was the Battle Creek Sanitarium through the lens of the fictitious Dr. Kellogg.  But the characters in the novel had a very different point of view. 

After weeks of diet consisting of Bean Tapioca, Corn Pulp and Gluten Mush; and exotic treatments including shock therapy, laughter exercises, and daily enemas, the only thing patients were relieved of was their wallets.  The “positive thinking” Kellogg boasts of, was fostered by a controlled environment in which husbands were separated from wives, and each patient went through their daily routine under constant surveillance from their personal “attendants.”  All to keep order and control, and to make sure the San’s image was never tarnished.  Never mind the man shocked to death during his sinusoidal bath. Mention of that was almost as taboo as participation in anything carnal.

In The Road to Wellville, T.C. Boyle shines a bright and comical light on commercialism in the healthcare industry.  It is a fact, and it is nothing new.  Every time I see a commercial for the new Fibromyalgia wonder drug, Lyrica, I wince.  Not because of the drug itself, but because now that Fibromyalgia is becoming an accepted and recognized disorder, it will also become a profitable disorder.  More and more drug companies will be coming out with prescription drugs to TREAT Fibromyalgia, but not to CURE Fibromyalgia.  Why would they want to find a cure, when the alternative is so much more lucrative?

And then there are yahoos like Dr. Whitcomb who claim to have found the cure to Fibromyalgia, but instead of publishing it in a medical journal so everyone can benefit, he lures desperate patients to his clinic and promises them a lifetime of relief in return for their life savings.  But it turns out the relief is short-term and yet their money is still gone.  If you believe so much in your miracle cure Dr. Whitcomb, why not offer a money back guarantee?  Why, because you are capitalizing on your patient’s pain and desperation.  It seems to me you have a Kellogg complex Dr. Whitcomb.

But you don’t have to take my word for it.  Let’s hear directly from one of your patients why don’t we.  The following was a comment on the blog of a former patient of Dr. Whitcomb, Darden Burns.  Mrs. Burns was instrumental in bringing a lot of this to light.  She received several comments from other patients of Dr. Whitcomb and the following was left by Robin Storms.

I am also a former patient of Dr. Whitcomb. First of all, let me say this…BUYER BEWARE…he is a very charming man and makes everyone feel like they are special and that he really cares. It took me a long time to come to the conclusion that the only thing he cares about is his bottom line. The first time I went to his clinic I spent two months there. I left Lake Tahoe thinking I was cured and continued to feel well for a month after returning home. That was it…one month…then all of my symptoms returned with a vengeance. I followed his after care instructions to the letter, but was made to feel by his staff that I must have done something to make my neck “slip” which caused the relapse. I returned for one week last December, because Dr. Whitcomb said he had a new technique that he was teaching his patients to use. With this “technique” he said his patients were staying well after returning home. What a joke. The technique is nothing more than pressing up on the occipital bone and does nothing. It was during this visit that I brought to Dr. Whitcomb’s attention that just about all of my fellow patients had relapsed. I told him about one patient, a young 33 year old women, who was using a walker again because she was so sick. He told me three times during the week that he was going to call her, but never did. That just about says it all. That second trip to his clinic was very difficult for me. I saw the hope on the faces of the patients in the waiting room that they, too, were going to be “cured”. They reminded me of the wonderful group of people I spent two months with in his clinic, many of whom are now close friends. I knew that most of them, like us, had traveled a long distance to be there and were spending money they did not have. It broke my heart to know that they were being taken advantage of by a man who knows that his patients do not stay well. With that said, Dr. Whitcomb is still advertising and traveling to promote his clinic. On a recent television program that was broadcast on a Christian television station he stated that follow up care is rarely needed. This is simply not true and he knows it. – Robin Storms

It was after reading this post that I was made to think about The Road to Wellville and similarities between Kellogg and Whitcomb.  But I may as well compare them to the big drug companies too – companies that sell expensive drugs, which often have worse side affects than the conditions they treat.  I believe many enter the healthcare profession because they want to help their patients and make a difference, but sadly there are those looking first and foremost to line their pockets.  And this is why I care about the practices of a doctor I have never met.  He may not have directly taken advantage of me, but indirectly he has taken advantage of us all.