Friday, March 8, 2013

Explaining Fibromyalgia to the Normals

In having Fibromyalgia, I am often tasked with trying to explain it to people who don't have it... "the Normals". I often use the Spoon Theory to help explain my day and rationing energy and tasks, but this is a great article to help others understand.

The following is an article that came from the Men With Fibro website. It's copyrighted by Don Fletcher (who has an amazing way of putting things down into writing) and Men With Fibro.  It's a really good resource in trying to explain Fibromyalgia to others.

Explaining Fibromyalgia to the Normals

By Don Fletcher

Every so often a new member here will ask the same question; “please help me explain what it is like to have fibromyalgia to the people in my life”. Other than finding a good doctor this is the biggest problem that we have to deal with - finding a way to help those in our lives to understand what has and is happening to us. The sad truth is that there is really no way to do this because other than finding a way for them to live our lives for at least a few months a healthy person cannot truly understand what it means to have to live with fibromyalgia.

I started writing this article some time ago and then put it aside. Why? Because I found that thinking about how to explain having FM to someone who does not took me to some very dark places, places that I wasn’t certain I wanted to go. I also had to ask myself if I was going to these dark places because of where my head was at the time or if these dark places were the reality of what it was to have to live with FM. Then there was the question of actually exposing someone who was trying to help someone that they loved to the darkness that comes with having FM. Would that information actually help them or would it just add to their burdens?

After much consideration I have come to the following conclusions. The first was that if I was going to write this it had to be brutally honest or else it would not be worth writing, nor would it be worth reading. My own experience has taught me that when those of us who suffer with FM think that we are hiding things from those closest to us all that we are doing is fooling ourselves. Those who really want to understand what it is to have to live with FM want and need that brutal honesty. It will be difficult but they can handle the truth.

The other conclusion that I came to was that if I was anything less than brutally honest I would be doing a great disservice to my fibro brothers and sisters. I have written many times that FM is an ugly disease, to attempt to hide that fact when trying to explain what it is to live with it would not help someone understand anything about FM. If anything it would have the opposite effect.

Having said all of that I think that it is best to put in the following disclaimer. This is based on my experiences living with FM. What you have gone through, are going through, and will go through may be very different. My purpose in writing this is to provide a starting point for you to discuss your situation with the people closest to you. Read the article first and then decide if you want to show it to those people. If you think that it will help then give them a copy, otherwise don’t bother.

So, to the healthy person who wants to know what it is like to have FM, this is what I would say to you. If you are willing to listen with an open mind there is a chance that this might work, that you might come away with a better understanding of what we are going through. But if your mind is closed all that this conversation is going to accomplish is to waste the time and energy of the person with FM. FM is real, it is a chronic condition, and the person in your life has been diagnosed with it. That is the starting point that this conversation must begin at, because if you don’t accept that FM is real, nothing is going to change your mind.

The first step to understanding what it is like to try to live with FM is to understand that this is a very poorly understood medical condition and one that varies from person to person. The types and severity of symptoms vary widely, from the very mild that a few over the counter pain pills take care of to those that are almost completely debilitating. Every person who has FM has chronic widespread pain – it is the defining symptom of this disease – but after that each person experiences their own set of problems. Each person also will experience different levels of success in dealing with this disease. Some will find a combination of medications and/or therapies that will keep their symptoms firmly under control while others will never find anything that gives them relief.

The difficulty doctors have in treating us with any level of success is that what is happening in our bodies is that certain functions, primarily the way we experience pain, are not working properly. There isn’t anything broken, nothing that will show up on any medical test, things just are not working the way that they are supposed to. Since medical science does not understand how these processes in our bodies actually work, the doctors don’t know what causes FM and they have no idea how to cure it. The best that can be hoped for is to keep the symptoms under control and that is a trial and error process, most often involving many trials and a lot of errors.

A very good example of how little medical science knows about how our bodies work is the digestive process. No doctor on Earth can explain to you how the body takes in food and drink and then processes it into the nutrients our bodies need, turning the things that we don’t need into waste that the body then expels. Many of us with FM also have Irritable Bowel Syndrome, meaning that our digestive systems are also not functioning properly.

In fact there are a large number of other medical problems that often occur with FM. Doctors refer to these as co-morbid conditions. Due to the fact that the symptoms of the FM and these other conditions are often the same as more serious medical problems a person with FM often goes through an almost continuous cycle of medical testing prior to being diagnosed. To be safe the doctors have to find out what you don’t have before they can tell you what you do have. Even then you have to be fortunate enough to find a doctor who knows enough about FM to be able and willing to diagnose you with it.

After getting a definite diagnosis a person with FM then begins the frustrating process of trying to find the medications and/or treatments that will keep their symptoms – most importantly the physical pain – under some level of control. Since the doctors don’t know and have no way to figure out what is causing the physical pain process to malfunction the best that they can do for us is to try us on a variety of medications, hoping to find the one, or far more likely the combination of medications that will give us some relief. And please note here that I said some relief  because at best the medications are only going to take away enough of our physical pain to allow us to function on a daily basis.

So there is truth number one about having FM; we are in physical pain all of the time. The best that we ever get is for the physical pain to go down to a level where we are able to ignore it. Medications might help but for most FM sufferers they only take away a portion of the physical pain – the figure that I have heard mentioned many times is 25% at the very most. If we are fortunate this will allow us to do things like light exercise, stretching, as well as utilizing other therapies that can also ease our physical suffering.

You may have noted that in the last two paragraphs I have made a point of referring to physical pain and have not just said pain. The reason for this is that people with FM also suffer a great deal of emotional pain as well. Even more than the physical pain this is what we often try to hide and are far more reluctant to discuss. Part of the reluctance comes from male pride, part comes from not wanting to make things even more difficult for the people who love us, and part comes from how FM is viewed by far too many and how that point of view causes others to treat us.

For those who are unaware of it far too many people, including many in the health care field, regard FM as a mental disease. To be blunt they think that anyone who claims to have FM is faking it, that it is not a ‘real’ disease, and that the person who claims to have it is mentally ill. These people dismiss our pain as ‘all in our heads’ and, when it comes to the doctors who have this opinion, all that they are willing to do is maybe prescribe some form of antidepressant and refer us to a psychiatrist. Almost all of us with FM have unfortunately been in an examination room with one of these doctors. Added to that are those friends and family members who treat us that same way and tell us that we are lazy, seeking attention and says things like ‘if you would just man up, stop whining, and forget your pain you would be all right’.

Surrounded by this much negativity, experiencing constant pain, and watching this disease slowly take away the life that we knew it becomes very difficult for a person with FM to avoid becoming bitter, angry, and depressed. Since FM is not something that can be detected by any medical test and with so many doubters around us and in society in general, doubt also creeps into our own heads. We begin to think negative thoughts about ourselves as the FM takes away the lives that we had piece by piece even as we fight to try to hold on to it. Maybe we are crazy, lazy, or just whiny complainers who just need to man up but the more that we tell ourselves that if we decide not to allow the FM to take anything more from us, the more that it does take. It becomes very easy to allow the negative thoughts to dominate your thinking at this point, to give in to the depression. Medical studies have shown that the rate of depression amongst those with FM is four times higher than it is in the general population. That, combined with the effect that antidepressants have on the pain center of the brain has caused many doctors to make the mistake of thinking that FM is caused by depression. The truth of this is that you cannot be in pain 24/7 and not get depressed but the FM causes the depression NOT the other way around!

Dealing with the physical and emotional pain is made far more difficult for many of us by the fatigue that comes with having FM. The three most common symptoms of FM are chronic widespread pain, chronic fatigue, and sleep disturbance. Because of what goes on in our brains we do not go into the deepest level of sleep – the stage where the body and mind heal themselves – and as a result we suffer more because our physical problems take longer to heal. Adding to the problem is that without this healing sleep our brains also do not heal, the result being a state that those with FM refer to as the ‘fibrofog’.

Fibrofog is the term used to describe the problems that doctors call ‘cognitive impairment’. What this means is that we have trouble thinking, focusing, and concentrating. We have trouble remembering things, following conversations, doing even simple mental tasks, and anything else that requires mental focus and concentration. When the fog is particularly severe our physical pain is also amplified because we lack the concentration required to be able to ignore it.

This is often the most difficult symptom for us to deal with. It is very frustrating to be in a situation where you cannot do a simple thing. I have had times where I could not remember how to do simple things that I have done many times. It is a real struggle to not allow the frustration to overwhelm you and to become angry as you stand there thinking ‘I KNOW this!’ but your brain is too tired to dredge up the memory that you want it to.

This is what it is like to have FM. It is a constant fight; a fight against the physical pain, against the emotional pain, against the fatigue, against the vast amount of ignorance, prejudice, misinformation and lack of compassion that we encounter far too often. Even as our health deteriorates, because in spite of what the medical profession will tell you FM is a progressive condition, we are faced with a fight every single day. We fight to keep our physical symptoms and fatigue under control to a point where we can function. The same is true for our mental symptoms because even when we are at our best those are never very far away, all that it takes for them to emerge is one bad flare up of the physical symptoms and the fatigue. When those are very bad it makes it much more difficult not to give in to the negative emotions, the anger and frustration. We fight for compassion, understanding, and above all respect. We have a legitimate health condition, a fact supported by ongoing medical research.

Above everything this is the most important thing that we are asking you to understand; FM is real! Even if we look healthy we are not and even when we follow the doctors’ advice we have very little control over our symptoms. We have days when the symptoms are low enough that we are able to do more but we also have days when the symptoms are flaring when we cannot do the same things we did the day before. The most frustrating thing for us is that we never know what kind of day we will have until we get up that morning!

FM is a very frustrating disease both for those who have it and those closest to them. If we are to prevent that frustration from turning into anger we need to understand what is going on with one another. I hope that what I have written here will provide a starting point for that understanding but in your own relationships there is only one way to truly gain that understanding. You must make the effort to communicate with each other and, as difficult as it will be, both sides need to be fully open and honest about what they are feeling.

Every single person affected by FM, both those who have it and those closest to them, will experience fears, doubts, frustrations, anger and a whole range of other emotions. The choice is to share those emotions or try to bury them deep inside. Trust me when I tell you that if you try to bury them they will not go away, they will grow, fester, and come out at times and in ways you cannot control.

If you truly want those closest to you to understand what it is like to have FM talking openly with them is the only way to achieve this goal. If you share your fears and frustrations with them and are open to listening it will encourage them to share their fears and frustrations with you. This open dialog is the only way to provide each other with an understanding of what each of you is experiencing having to deal with FM. Ask anyone who has done this and they will tell you that as difficult as this is once you have done it everyone will feel a little bit better about the situation. That will make it a lot easier for everyone involved.

©2012 D.G. Fletcher and Men With Fibro

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