The Emotional Baggage
of Fibromyalgia
by Cody K. Wasner, MD
From the Fibromyalgia Times, Fall 1998, Volume 3 No. 2
We all want to know why we have FMS and how we can cure it. Because we don't have the answers to that, I'm going to talk about some things that I think are important. I'd like to go from the orderly and well-understood area of science to the area of the emotions where things happen that are unpredictable. When we have a chronic illness, we have to deal with these emotions. They're hard subjects, especially for us men. Men aren't trained to talk about emotions and don't especially like to.
We really don't understand how emotions work in illness. We don't understand what effect they have on our disease, on our getting the disease, and our getting well. Emotions are hard for a patient and doctor to talk about, especially when things aren't going well. In these days of managed health care, your doctor may not even know who you are. He doesn't know what makes you an individual and why FMS is such a big deal for you. You need to tell him. You may have to take him by the throat, shake him, and say "I need to talk about these things." If he isn't interested, you need to find someone who is because we doctors and patients need to be in this together.
But first, we have to understand ourselves. One of the reasons I wrote my book, [Pills Aren't Enough: Stories for Emotional Healing in Chronic Illness, 177 pages, $18.50 + $3.50 S&H. Published in 1997, this book is available from Anadem Publishing, 3620 N High St., Suite 201, Columbus OH 43214. Their phone number is 800-633-0055.] which deals with emotional issues, is because I think it allows us to reflect on what's really important to us and what's been effective. If we don't do this and don't bring our spouse and family into our reflections, we won't get very far. Once we understand ourselves, we're better able to talk with our doctors. Most of my patients have something that's really important to them -- even if it's wanting their FMS to lay low on Saturday nights because those demolition derbies are the highlight of their week.
Accumulating Your Baggage
Fibromyalgia is unique. Of all the illnesses I deal with, I think FMS is special -- for a lot of different reasons, all of which involve some kind of emotional baggage. If you would imagine that once you've gotten ill, you are going to go on a trip. You are traveling to a new destination. Imagine you're going to take an airplane for this journey. First, you go to the ticket counter and check your baggage. It's the same with our emotional baggage. We can't carry it with us or we won't get to this new destination. Now, we can insist on keeping it or putting a bomb into it to blow up the plane, but we won't get anywhere that way. So we need to leave the luggage at the counter and take the trip without it.
Unfortunately, with FMS, you have more baggage than almost every other illness. There may be somebody in this group that had FMS diagnosed immediately with their first symptoms by the first doctor they saw, but probably not very many of you. If we'd ask, I bet we'd have a few hundred stories or odysseys of what took place before you were diagnosed. Some of you may have thought at one time that you had cancer or some other disease. Almost everybody at one time or other is told, "Gee, this must be due to stress, this must be in your head, this isn't real." And I can't tell you how many times I've seen innumerable tests done before someone is diagnosed. Doctors can do all kinds of tests that don't show anything -- study after study, muscle biopsies, brain scans, blood tests -- on and on it goes. The emotional cost can be tremendous. You have to go through a lot more than most people with a chronic disease before the disease is even diagnosed.
And More Baggage
Then of course, even if the diagnosis if made, there is that "wonderful" treatment. I say that with humor. There are now nineteen NSAIDS (nonsteroidal anti-inflammatory drugs) and most of the people I see have had at least twelve. By the time you're diagnosed, you're tired. You're tired of having expensive tests and expensive medicines with side effects. You're tired of being in the middle of the controversy of whether or not FMS exists. This is part of the baggage of FMS and it's so different than that of most other people with chronic illnesses.
It's been said that there can be no knowledge without emotion. You may be aware of truth, yet until you truly feel it emotionally, it's not your truth. The experience of the soul must be added to the cognition of the brain. Even when you know that because of FMS you've had to go through things other patients haven't, you need to bring those emotions out on the table and deal with them or they're going to fester inside you for a long time. That would make things more difficult for you, your family, and your doctor.
Looking Good & Feeling Bad
One of the most interesting situations I've had over the years is to take care of a lot of people with other illnesses that have, for one reason or another, eventually developed FMS. This highlights to me how different fibromyalgia is and how much harder it can be to deal with than even some of the life-threatening illnesses.
One of my favorite patients over the years was a delightful Italian gentleman from New York. He was 75 years old, but a 40year-old person at heart. His first comment to me was: "Doc, I'm dying. You've got to fix me, Doc." At that time he actually was seriously ill with a very unusual condition called Paget's disease that involves the bones. He could hardly lift his arms and it had caused him serious problems like heart failure and difficulty breathing. He'd given up almost everything he liked to do.
It took us a long time to diagnose it. We were lucky enough to get that illness treated and after about a year he was much better. Then, about a year after that, he came in for a routine follow-up and said, "Doc, I'm dying." He proceeded to tell me his symptoms and it was apparent he'd developed a strong case of FMS. We did everything we could and we got him somewhat better but he continued to come in and say, "Doc, I'm dying." He was having a really hard time dealing with this. Although he was less seriously ill and his life was less threatened, fibromyalgia was much more disabling and serious to him.
One day he was really upset and we talked about why it was bothering him SO Much. He had a great line which I will always remember. He said, "Doc, all the time now I go to my friends and all the time I hear 'Joe, You look good. Joe, You really look good. That doctor's really fixed you up'." He said, "Doc, you haven't fixed me up! I'm going to be the best looking corpse in tile cemetery." And he's right. I wish we could get rid of that comment about looking good. It's so hard to deal with. This adds to more emotional baggage in FMS. You may feel bad but it doesn't show.
Wanting Something "Easy"
I want to tell you one other story. I have a patient who's been a rheumatology nurse for a long time. She'd already had a lot of experiences with these illnesses when she began to develop her own problems. She had some blood tests indicating she might possibly have rheumatoid arthritis or lupus. She came in the office and I examined her, did a workup and some further tests. When she came back for her next appointment we sat down and talked. I said, "I'm absolutely certain you don't have rheumatoid arthritis or lupus." And she started crying. Now, being a man, I've found that when women cry it's a little hard for me to know exactly what that means. In fact, I almost never know what it means, and it never seems to have a correlation with what I think it's supposed to correlate with.
But she was quite upset and we talked about this at length. It came home to me how devastating the diagnosis of FMS is. She was crying because she had dealt with FMS patients over the years. She mid, "I know how hard this is and I just wanted to have something easy. I wanted something easy like lupus or rheumatoid arthritis." And in a sense, she's right. She'd seen some of the damage that rheumatoid arthritis or lupus can do, but she knew that FMS was harder to deal with.
Denial, Denial
A lot of times, the things we're asked to do when we have FMS are simple things. We know what to do but we just don't do them. Why not? Well, I can speak from my own experience with having an arthritis problem. I need to take my medicine and I have to do my exercises. If I don't, I'm in big trouble. I know this and I say this 20-30 times a day in the office so why don't I do them? Well, I don't think it's because we're lazy or stupid. It has to do with deeper factors such as these emotional issues that are hard to deal with and hard to face.
For me, it's a form of denial, a kind of subconscious thing. If I don't take my medicine, it means I'm not really sick. I don't really have this problem. I've only had it for five years but maybe I don't. Maybe today I just magically lost it. Is that wrong? No, of course it's not. The point is that sometimes when we don't do things, it's for reasons we don't understand. Are we all rational all the time? No, never. But this is again more emotional baggage that's heavy for us to carry. We need to check it at the counter and it's hard to do.
Add In Anger
I wanted to use one more example from myself about anger. One of the things that's especially hard and painful for me to do is to lean over and pick things up. I'm uncoordinated and sometimes when I try to lean over to get something, I'll kind of fall over. So, every time I drop something, I get mad, I just plain get mad. It's a little thing but I'm angry every time because it's a reminder to me that I'm not the person I used to be.
I'll rarely say I'm mad, though, even to my wife. I just haven't dealt with it yet. Now, my wife could run around and pick things up for me but then I'd be really mad. I don't want her to remind me that I can't do this. I need to bring this out on the table. I need to admit it to myself and discuss it with my wife because she's not responsible for this and she can't fix it. I need to check this baggage at the counter and not blow up the plane!
"Hopping Mad"
Is there anything different about FMS in terms of how we deal with anger? I think there is. I think FMS is unique and is not just a disease of the muscles and joints. Maybe it has something to do with the nervous system. Almost every patient I've ever taken care of gets angry at some time or other when they have FMS. I can see patients that have rheumatoid arthritis who have had to undergo similar or even more severe lifestyle changes, and they never get mad. Sometimes I can't do anything for them and they still don't get mad. Then they get FMS and they're hopping mad. In fact, if my patients don't get angry at their spouses (and mostly if they don't get angry at me), I often wonder if I have the right diagnosis.
The pain of FMS is somehow different. I've had patients with severe rheumatoid arthritis. They've had 4-5 joints replaced and that is not fun surgery. Even getting to the point when a joint is damaged so much you need to replace it is not fun. But the pain that they have when they develop FM is more severe in their estimation because it's one that's harder to deal with. I would encourage people to avoid any type of guilt about quot;I can't take the pain," or "Gee, am I just being a baby about this?" because you're not. This is a different kind of pain.
The Guilt Trips
I'd like to give you one more story because I think this highlights again the emotional baggage that we bring. I have a patient that had very severe rheumatoid arthritis as a child. He had a lot of his surgeries before we had good techniques to make people better. He has a lot of deformities and you can tell he's obviously been through a lot. But in spite of his arthritis, he's managed to have a professional career and do many things. Then he developed FMS. The next thing I knew, he quit using his disabled parking space whenever he would go into a store because he felt guilty using it. It was the strangest thing. For the life of me, I couldn't figure it out and neither could he. He was as disabled as anybody is ever going to be but now, because he developed FMS, he thought he didn't deserve to use that space. Once we talked this out, he's back to using it again. I think this emphasizes what this kind of pain or illness can do to your emotional thinking.
With a chronic illness, we still compare ourselves to everybody else. But most of us aren't supermen; we're not Christopher Reeve talking at the Academy Awards or the Democratic convention. We can't do what we used to do. Even if we can, we're always comparing ourselves to somebody else. We need to deal with that and ask ourselves if this is just more emotional baggage.
Changing Our Thinking
One of the important things we need to consider is our relationships. When we get an illness, everyone is affected -- all of our contacts, our friends, sometimes the people at our workplace, and certainly our kids and our spouse. People have described marriage as a dance. When your spouse takes a step in one direction, you have to take a step in the same direction or it doesn't work. You fall over or trip or stumble. With a chronic illness, oftentimes you will be here and the other person will be there. Your family and friends may need help, too, going through the same stages that we do. There's something I like to have my patients do when they come in with their spouses. Many of my patients are women and they bring their husbands. You know, we men have our own ways of dealing with things. We don't necessarily think about problems, we just try to fix or solve them. That's what we think we're designed to do. So the biggest frustration for most of us men is that we can't fix it. Our spouse has an illness that we can't fix.
So I ask the well spouses to try to visualize it a little differently. Think of it as aging, not illness. You can't fix aging. We are all aging and we all deal with it. One of the strongest supports we have through life is that our spouse or children or friends help us as we get older because everyone knows you can't fix aging. The same thing is true with a chronic illness. In most situations, your spouses can't fix it. We're not the way we used to be. But it's something we can try to accept even though it can't be fixed.
Chronic illness changes us and often our spouse has to change as well. Visualizations like the one above can help us get around some of our emotional baggage. We need to work through these things so we can deal with them. Unless we do that, we won't come out where we want to be -- which is on the other side.
My last comment involves an expression that actually I don't like very much. Whenever you want to discuss a subject that's really controversial or upsetting, someone will say, "Don't go there." Well, I'm encouraging you to go there. If you go there, lots of good things will happen to you. And you will come out on the other side.
[Cody K. Wasner, MD, is an accomplished writer and a rheumatologist in private practice in Eugene, Oregon, where he has many patients with FMS. The information above was included in his presentation at FMAA's 1997 fibromyalgia conference. Dr. Wasner has served as chair of both the Public Education and the Unproven Remedies Committees of the Arthritis Foundalion and was, for four years, the national spokesperson this organization.]