Thursday, August 9, 2012

The Mental Aspect of Chronic Illness

I've been dealing with constant fatigue and memory loss more so than usual lately. As a result, I have been dealing with a lot of mental issues.... Just thinking about "it". It's difficult dealing with "it", a disease that has no apparent cause and no apparent cure and one in which  medications/rest/exercise only work sometimes and when they do, it's not completely. It's an entirely frustrating situation to be in.

The following is an article that I read on the Men With Fibro website a long time ago. It's copyrighted by Don Fletcher and Fibrohugs and it's a really good article in trying to understand how to deal with Fibromyalgia.

The Mental Aspect of Chronic Illness
by Don Fletcher

Over the past several days events in my life have brought home to me a truth that applies equally to both living with a condition like fibromyalgia and life in general. That truth is that our thoughts have a profound impact on how we function. In life how we think about ourselves and our abilities will dictate not only what we do but also how well we are able to do it. With respect to our health, specifically living with a chronic condition like fibromyalgia, how we think dictates how well we are able to cope with the disease as well as how well we are able to function on a daily basis.

I must confess that I was reluctant to agree to write these columns. Why? The simple answer is that I have always been my own worst critic, a typical type A personality. When Ken first asked me to do this my thoughts immediately went to reasons why I should not do it. At the top of the list of those reasons was that I simply did not see what I had to offer, that I was not capable of doing a good enough job despite the confidence Ken had expressed in my abilities. And despite all that I have learned over the years and the things that I have accomplished I still have not learned not to be so hard on myself. I don’t need to be perfect; I just need to do anything that I set out to do to the best of my abilities. That is all that anyone can expect from themselves.

This same lesson also applies to how we deal with a chronic disease like fibromyalgia. All that we can expect from ourselves is to do the best that we can to the best of our abilities. If our bodies are hurting we cannot expect that we will be able to complete a physical task quickly and without stopping until it is done. If we are in a fog the same applies to mental tasks, we are simply not capable of completing those tasks quickly without stopping. But why then are we so hard on ourselves when we cannot accomplish these tasks in this fashion? Time and again I see posts where fibromites are expressing guilt or another negative emotion over the things that they could not do because their symptoms made it impossible for them to do those things.

The answer to that question lies in how our culture looks at health and illness. We expect to be healthy and that when we get sick that our medicine will be able to completely cure us and do so quickly. If it is impossible to cure what ails us then we expect that the disease will either kill us or else leave easily seen signs of its’ presence on us. We also expect that with all of the medical technology available to us that we should be able to know what causes every disease and be able to point to some kind of test that clearly shows that the doctors know exactly what is wrong with us, even if they are currently unable to cure it.

That is where the worst of our mental issues with this disease stem from. We don’t look sick so how can we be sick? And there isn’t a test that you can point to and say that the doctors found this and it confirms that I have fibromyalgia. As a result we have the problem with those doctors who refuse to believe that the disease actually exists and because of that debate there are those in the general public who also believe that this is all in our heads. On top of this all is our expectation that our medicine should be able to cure us or at the very least take away all of our symptoms and do it quickly. The lack of a single, totally effective treatment also contributes to the belief that fibromyalgia must be a mental problem. And too often we as fibromites buy into this garbage that we don’t get better because we don’t want to get better.

So we fibromites are left to deal with the doubts of both those around us and, much worse, the ones that we have ourselves. This damned disease as I have heard many here on Fibrohugs call it just does not conform to what we expect a disease to be. We don’t know what causes it, we don’t know how to cure it, and the best that we can hope for - to keep the symptoms under control - is a process of trial and error with no guarantee of success.

So what are we to do about this situation, how do we get rid of the doubts and get to a good mental place? Recently I read an article that stated that when a person is diagnosed with a chronic disease they go through the same grieving process that one goes through when someone close to them passes away. Having had the time to think about this I would agree that the process is very similar but in my opinion there are some significant differences due to the way that society views the two situations.

According to the accepted model there are six stages in the grieving process. Those stages are; shock, denial, anger, bargaining, depression, and acceptance. We do not go through this process in a linear fashion, progressing through each of these stages in order being done with each as we go on to the next. Each person will experience their grief in a different way, jumping between these stages and often revisiting some of them over and over again.

I want to be very clear here each person will grieve in their own way and at their own pace! There is no right way or wrong way to grieve so when I discuss the stages of grief as they apply to being diagnosed with a chronic condition I am taking this from my own experience. If what I say does not in any way resemble the process that you have gone through or are currently going through it means nothing more than we are different people.

With fibromyalgia I believe that there is actually another phase prior to the shock. Most fibromites that I know have said that their initial reaction to their diagnosis was one of relief, a feeling of ‘finally they know what is wrong with me’. The shock comes when you learn what it means to have this disease.

You have endured many months or even years of test after test trying to figure out what is causing you to feel the way that you do. Each time you hope that this is the one that will tell you what is wrong so that the doctors can then cure you and make you healthy again. And with each normal result the depression and despair gets a little worse. You are tired and in pain and no one can tell you why or, even worse, make it go away. And then finally a doctor gives you a name for what is wrong with you and you feel relieved to finally know that your problems have a name. But the relief is very short lived because you will then be told that all the doctor can do for you is prescribe medications that may or may not keep your symptoms under control. That it will be a process of trial and error because not all people respond the same way to these medications and it may take some time to find the right medication or, far more likely, combination of medications that will keep your symptoms under control.

And at this point and through the time that you are searching for the right medications to keep your symptoms under control you will experience the denial, anger, bargaining, and depression. There are many different thoughts that might come into your head during this time, some of them might be;

“I can’t have a disease like this. The doctors must have missed something. If only I can get them to keep looking they will find out that I have something else, something that they can cure.”

“Why me? Why did this garbage have to happen to me?”

“Please let this medication be the one! I want my life back so this one has to be the one that will make the symptoms go away.”

“What’s the use, I try everything that they prescribe and do everything that they tell me to do and nothing works. This is never going to get better.”

“Those damned doctors just gave me a name because they were not willing to do anything more for me! They gave up on me.”

“I can’t live like this. I wish that the doctors would either fix me or finish me.”

“I am such a wimp! I should be able to ignore how I am feeling and just do what I need to do.”

I could try to go on but these are some of the thoughts that I had while trying to come to grips with being a person who suffers with fibromyalgia. Again, each person will grieve differently so you may not have had thoughts like this and if you haven’t I hope that I have not planted any seeds in your head.

But how then do you get to a point where you can accept what has happened to you and be all right? And this is how I define the stage of acceptance; you accept what has happened to you and are at peace with that mentally. Because when dealing with a chronic illness there is another possibility, a stage I call resignation.

What is the difference? Acceptance is a positive stage, resignation is a negative one. In resignation you don’t accept what has happened to you, you become resigned to your fate. In resignation you resign from life because life has screwed you over and since you cannot live it completely on your own terms you decide that life isn’t worth living. You allow yourself to become angry and bitter but worst of all you refuse to do anything to try to make your situation better because you don’t believe that anything will work. Your attitude is why bother trying because you know that nothing will work. More to the point, nothing is going to work the way you want it to, it will not cure you and give you back the life you had prior to getting sick and you are not willing to settle for anything less.

The key to avoiding resignation and getting to acceptance is very simple. Yet as with anything simple it is also very difficult and not to be sexist, but it seems to be harder for men than it is for women. There are two parts to the key. The first is to learn three very simple little words; ‘I need help’. The second part of the key is to be willing to accept that help from any source.

Most of us are familiar with the Serenity Prayer, the one that goes God grant me the serenity to accept the things I cannot change, the courage to change the things I cannot accept, and the wisdom to know the difference. It is a simple prayer but it contains a rather profound wisdom in it. When dealing with fibromyalgia you need to be able to accept that which you cannot change, change that which you cannot accept but you need to have the wisdom to be able to tell the difference between the two. The problem is where to acquire that wisdom.

From experience I will tell you that the first thing that you must do is find a good doctor, one that you trust completely. You must have the confidence in your doctor that you know that they will be your partner in treating your fibromyalgia. And I say be your partner because if you have this disease you are going to be looking for treatment options on your own. A good doctor will be willing to listen to options that come from other sources and give you unbiased advice on whether or not such an option is right for you.

Develop a good relationship with your pharmacist as well. Keep in mind that medications are your pharmacist’s entire job while they are only a small part of the doctor’s. From my own experience it was a pharmacist who suggested Gabapentin for the overall treatment of the pain and Baclofen for the muscle tension.

When within your budget try alternative sources of therapy. I see a chiropractor because my neck and back often become very tight and sore. He is able to help me with those problems and ease the pain that I have. If it were within my budget I would also have tried massage as I have heard many say that it helps them. There have also been other treatments that I would like to have tried but due to financial constraints was unable to. But be careful here of any product that makes claims that seem to be too good to be true. As with any other disease there are those who prey upon the desperation of sufferers in order to make a quick dollar.

But this covers mainly the physical part of fibromyalgia. You must also be willing to ask for and take help from sources that will help you with the mental aspect of the disease.

Ask your doctor if there are any pain clinics that operate in your area. For newly diagnosed patients there are programs that will teach you skills to help you deal with the physical and mental aspects of your chronic illness. Health regions in Canada have also begun to offer classes like this. The one offered in my region is called “Living Well with Chronic Conditions” and it uses a workbook titled Living a Healthy Life with Chronic Conditions.

But these courses offer only the basics of dealing with the mental aspect of your fibromyalgia. You also need to ask your doctor to find out if there is a psychiatrist in your area that specializes in the treatment of patients suffering with chronic pain. I can see that many are shaking their heads right now thinking, ‘first he tells us that this isn’t all in our heads but now he says to see a psychiatrist’. I understand that there is a stigma attached to seeing a mental health professional of any type and that the reluctance to see one is made much worse by the quacks who tell us that fibromyalgia exists only in our heads. However, there are two extremely important reasons to see a psychiatrist who specializes in treating patients with chronic pain.

The first of those is that these doctors can teach you methods to ease your pain through the employment of certain mental exercises. The second and more important reason is that no one can be in a situation in which they are almost constantly in pain without having it grind them down mentally. A psychiatrist or psychologist has the training to help you deal with this constant mental pressure. They can also help you work through all of the emotions that accompany a chronic illness, especially the ones where you use yourself as an emotional punching bag. After all, negative emotions will also make you feel worse physically as well.

And during the period of grieving there will, unfortunately, be a lot of negative emotions. You will face the task of having to adjust to the new you, the one that has fibromyalgia and accepting that the old you, the healthy you, is gone. And to pile on the difficulties for you at this time you will also have to deal with the reactions of those around you to what has happened to you. Some of those closest to you will be sources of comfort and support while others will be sources of stress and anger. And there is no escape from the situation and as all too many of us know having to deal with all of this change and loss can be overwhelming.

But just as you need a doctor to help guide you through the process of getting your physical symptoms under control you also need a psychiatrist or other mental health professional to help you deal with the mental aspects of the disease as well. Trying to ignore them will not work; they will not simply just go away. If you try to do this those negative emotions will fester just below the surface and the problems will get worse until it will come out in ways that you never intended. And while the negative emotions fester they will quite literally make you sick, or at least sicker than you have to be because they will be a constant source of stress and anger.

In the end what it all comes down to is this; in order to feel the best that you can with this damned disease you have to treat both the physical and mental aspects of it. And while you can try to do it alone it will be a shorter and easier journey if you can just say ‘I need help’ and take that help from every source available to you.

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