I happened to run across a blog yesterday while I was searching through some Fibromyalgia posts that was yet another reminder of how ignorant society still is on chronic illnesses like Fibromyalgia. If you read her post, when you scroll to the bottom to see what categories she has posted her opinion of Fibromyalgia under – Whining is one of them.
For those of you who suffer from Fibromyalgia, when you read this post and some of the excerpts I have included below, you will find yourself in disbelief that there are people who still think this way. Debra, the author of Big Brass Blog, had this to say about Fibromyalgia (I have included my comments after each quote):
I know I’m going to get into trouble and offend people with this post but fibromyalgia or FMS as it’s now called, happens to be a pet peeve of mine. When women in Africa, the Amazon or some other poor nation start to suffer from this disease, maybe I’ll believe in it.
My Comment: First off, Fibromyalgia is not exclusive to women. Women make up a higher percentage of FM patients, but men and children are also not excluded from this ILLNESS – yes, it is an ILLNESS. It is estimated that 3 – 6% of Americans have Fibromyalgia (Source: National Fibromyalgia Association). Secondly, I’m sure there are women, men and children in less-fortunate countries who have Fibromyalgia and suffer daily. But in the U.S., we are fortunate to have the means to treat these types of illnesses.
While there are people who legitimately suffer from widespread chronic pain, fortunately they are few (not as few as there could be) and far between. Unfortunately, they are rarely treated for the amount of pain that they actually suffer and live under the threat of having themselves or their doctor arrested on some type of drug charge.
My Comment: Approximately 20% of the population suffers from chronic pain. However, the pain from Fibromyalgia is such that normal pain relievers do not ease the pain. We are not talking about slight aches here and there. It is excruciating pain that is felt to the bones that hinders our ability to function normally or at a decent level. I do agree that people who suffer from chronic pain are not treated properly.
While they don’t get the treatment they need, there are a whole group of people who complain about pain who get way too much attention. And now they get to have a drug for this “condition”.
My comment: There is no need for anyone to have to suffer or just “suck it up”. Life is too short to spend the majority of your time miserable. People with Fibromyalgia (CFS and other illnesses I’m sure you don’t believe in) often go years through suffering without “complaining”, whining, or being attention seekers. Do you get what CHRONIC means? Obviously, you do not have the slightest clue as to what it is like to live 24-hours a day, 7-days a week with chronic pain, fatigue and other disabling symptoms. It is those who have no clue who are the first to spout off ignorant remarks such as yours.
Only by people who refuse to deal in reality or those who like to profit from their difficulties. Take a pill, it’s easier than dealing with the fact that your life sucks, it isn’t working out the you want it to and your family only does what you want because they feel sorry for you or they just want you to quit whining.
My comment: This new drug, Lyrica, that was approved by the FDA to treat Fibromyalgia, is helping patients regain a normal life after years of suffering. As with any medication, there are patients who it is not helping and there are side effects. With illnesses like FM, there are no easy answers or even a diagnosis. Patients need to be treated in order for them to live a productive life.
Being sick with Fibromyalgia is not a cop out or an escape for us because our “lives suck”. If you take the time to talk to more FM patients, you would find that most of us were (and still are when able!) high-producing, active, happy, Type A personality, goal-driven, and motivated individuals.
I have a supportive, loving and caring family who BELIEVES that I am sick. They live with me, or have lived with me, and KNOW from DAILY EXPERIENCE what these illnesses can do. They know that there is no way I could have faked being ill for almost 20 years.
These women are almost always the first born girl and have some type of family problems where they were ignored unless they were ill. The majority of my patients had had mononucleosis or some type of flu like disease between 14 and 18 and it was the only time that they got consideration within their family. Since they are fequently of above average intelligence (have you ever noticed how well they research their disease?), they quickly learned how to manipulate people into feeling sorry for their problems.
My comment: I don’t know where your sources are to back up the claim of FM mainly affecting first-born daughters but that assumption is way off. FM affects women regardless of their birth order. Study after study after study has proven over the past several years that FM is of a physical origin – not psychological. As with any chronic illness, there is always a psychological component but many of those issues do not occur until AFTER the person becomes sick – not before.
Thank you, we are very intelligent. Intelligent enough to know that comments like yours are full of crap and have no basis. We are also intelligent and self-confident enough to stand up for ourselves in the face of controversy and ignorance (look in the mirror, please) and continue to struggle daily knowing what we go through is real.
The world is supposed to revolve around them and if you make any progress with them, they stop taking the herbs, they stop showing up for their appointments until they are in pain again and they absolutely refuse to change their sleeping habits. They always have some excuse for not being able to follow through or to complete a course of treatment. Then they go find another practitioner so they can start the process all over again and maintain their belief that nothing helps them. Wouldn’t want to lose that control over their loved ones.
My comment: There are always people, regardless of what illness they have, who do not follow through with treatment regimens. It is human nature in most people. But because many of us went many years without proper help and diagnosis, we have done and continue to try and pursue every treatment possible that will help us. Fibromyalgia is not a simple illness. It is hard to treat and a lot of times people quit taking medications because the product worsens the symptoms. I agree that some people tend to give up too quickly when trying a treatment, but that is not true in all cases. When flares of Fibro hit, patients find they can’t do anything at all – and that includes driving themselves to a doctor’s appointment.
The sleeping dysfunction in Fibromyalgia is not due to us not wanting to change our sleeping habits. Our bodies physically do not allow us to sleep naturally and at regular hours. It has been proven that Fibromyalgia patients have less deep sleep, awaken more often, and have more trouble falling asleep. Sleeping medications are often required to help patients sleep and often they don’t work for long periods of time.
If you feel that your experience as just a massage therapist rules out the daily experiences of millions of people suffering from the EXACT SAME SYMPTOMS, then have at it. I hope and pray that the day doesn’t come where you need compassion, understanding and someone to believe in you if you are stricken with a chronic illness.
Mrs. D says
I cannot believe the ignorance of people like this woman…her website is suitable for her because I see she has a set of BRASS ones. She obviously has never had to live through pain or any kind of chronic illness and honestly, if she was any good kind of massage therapist, she should know that Fibromyalgia and CFS are very real diseases. I have a friend who is a massage therapist and thankfully she has seen and KNOWS how to HELP others who are in pain and when she works on them, she can tell you all of the tender points of those who are her patients. For such a supposed intelligent person that Ms. Debra claims she is, her brain is pretty empty.
Please know my thoughts and prayers are with all who are in pain and suffering. My condition, RA at times leaves me feeling like a truck ran me through, but thanks to the grace of God, at least I can say that I do have good days where the pain is not so terrible. My heart goes out to you because I know what it feels like to be immobile and not able to get up in the morning…it’s got to be awful to feel that way EVERY DAY. Please know that there are people who “feel your pain” and “hear your hearts”.
As for this Brass lady, well, she obviously has a heart that is as cold as the metal as she wishes to be called.
Sandy Robinson says
Thanks, Mrs. D. People like this just really get under my skin. I have been furious since I read her site yesterday. It took a lot of restraint on my part to not really rake her through the coals, but I’m a better person than that. Hopefully she will never have to suffer as we do.
Mrs. D says
Sandy, don’t know if you noticed, but even if we wanted to respond, she closed the subject; perhaps this was a good thing because my tongue/fingers were feeling like they were turning into a double-edged sword. It’s sad that in today’s day and age people can be so ignorant. I don’t think she would have been up to the challenge of responding to all of the posts she would have received on the subject (I think she’s too chicken). You are right, hopefully she will never have to suffer…then again if she does, she will have a wealth of information here. ;o)
Sandy Robinson says
I did notice that she has the comments closed on those posts. She should get trackback information on her site from this one, so hopefully she will respond. I doubt it, though.
I have one comment, I hope if she ever gets fibromyalgia, she has a loving family.
I just wonder who she thinks she’s helping by having that attitude. I didn’t see her offer up much “help” just kept saying that people with chronic illnesses are doing what it “takes”.
I’d like to see her list of what she thinks it “takes”.
Pat E. says
Thank you for responding to this person. I clicked on the link today and the site was down. I would think that a massage therapist would have some understanding of the disease, since I’m sure many of her clients have it. However, her education must have been sorely lacking and I wonder about her competence in the field. While reading the snippets of her entry, I thought she was a doctor, from the way she spoke, and from what she inferred she told her patients. I just hope her practice doesn’t involve practicing medicine without a license.
Rosalind Joffe says
Blogging allows people to have all sorts of opinions and to let others know about them. It used to be that people like Big Brass Blog had to put up a podium in a market square and hope people would notice. I don’t think it’s worth wasting our time refuting such nonsense but articles like the one published in the NYTimes have to be rebutted. And they were from credible sources. The fact is that invisible illness is always something that many people will doubt – even with clinical findings. And when it’s a disease that doesn’t show up with an MRI or cat scanm, too many people question the validity. We can’t influence all the naysayers but we have to do our best to ensure that the people that we work with take this seriously enough to give us the support we need to do our best.
Sandy Robinson says
Rosalind, Thank you for your comment. I appreciate your thoughts and opinions; however, I do have to disagree with part of your comment. I believe that it is our duty as patients, and especially my duty as someone who is trying to raise awareness on these issues, to stand up for ourselves. If we don’t take a stand on these issues, who will for us?