Fibromyalgia: After the Diagnosis…

Thursday, June 9, 2005

By: Karen Lee Richards

Reprinted from FMOnline


You’ve just heard the words,”You have fibromyalgia.” How do you feel? Some of you are elated. After years of pain and uncertainty and visits to multiple doctors, often wondering if “they” were right and maybe you really do have serious psychological problems, you finally have confirmation that you have an actual illness. There is a real name for your suffering. Others of you are stunned and frightened. You’ve just been told you have a disease for which there is no cure. You feel like some of your worst fears are coming true. With dozens of unanswered questions churning through your mind, you wonder what–if anything–the future holds for you. Both reactions are perfectly normal. Regardless of your initial reaction, the question remains…what next? What comes after the diagnosis?

Once you have been diagnosed, you will begin a journey that will lead you through five stages. These stages are very similar to the five stages of grieving and death identified by Dr. Elisabeth Kubler-Ross. Although fibromyalgia (FM) does not cause loss of life, it does bring about a loss of our former lifestyle. It is both normal and necessary for you to grieve any significant loss. There is no set timeframe for you to go through each stage. You may go through one stage very quickly or even skip a stage completely. You may linger in another stage for awhile. You may move back and forth between stages. The crucial thing is to keep moving. While it’s important to give yourself permission to experience each stage as it comes, don’t allow yourself to get stuck in any one stage.

STAGE 1 – Denial/Fear/Isolation
Often your first reaction to a diagnosis of FM (or any chronic condition) is, “Not me! The doctor must be wrong. I’ve just been pushing myself too hard. If I take better care of myself, I’ll be fine.” You don’t want to believe that this could be happening to you. You’re afraid. You have a diagnosis, but very little factual information. Your circle of family and friends probably knows little to nothing about FM. Frequently you feel very alone in this stage. The best thing you can do to help yourself move through this stage is to educate yourself. Gather as much factual information about FM as you can find and study it carefully.

STAGE 2 Anger
As the reality of how significantly your life is changing begins to settle in, you will probably be angry–angry at God for allowing this to happen to you, angry at your doctors for not diagnosing you sooner or helping you more, angry at your family, friends or employer for not understanding what you’re going through. Although anger is a normal reaction, dwelling on your anger will only increase your stress level (thereby increasing your pain) and isolate you from the people you most need on your side. The most productive way to deal with anger is to channel it into determination. Set your mind to finding a treatment plan that is most helpful to you.

STAGE 3 Bargaining
At this point you may try to “strike a deal” with God. Maybe if you’re good enough, God will make this go away. The important thing to understand at this stage is that FM is not a punishment for something you’ve done wrong. It is one of many diseases or conditions that are simply a part of life.

STAGE 4 Depression
When the reality of your condition sets in, you will probably experience some degree of depression. You realize that your lifestyle is changing dramatically. You may no longer be able to do all the things you’ve always enjoyed. Your once hopeful future now seems like a big blank space with a gigantic question mark at the end of it. It’s perfectly normal to feel depressed over these changes. Who wouldn’t? This is often the stage that’s most difficult to move through. Depression brings with it a feeling of hopelessness and a substantial decrease in energy. You may feel like going to bed, pulling the covers over your head and waiting for the world to go away. You wonder how you can possibly face the rest of your life in pain. The first thing to remember is that you are going to have some good days and some bad days. The more you learn how to pace yourself, what activities trigger a flare and which treatment options help you the most, the more good days you will have. If your depression is severe or you are feeling suicidal, please talk with your doctor. You may have a chemical imbalance that can be helped with medication. Your life may not be what you expected but it can be good. When all is said and done, it may actually turn out to be better than you imagined.

STAGE 5- Acceptance/Re-Evaluation
Acceptance is not resignation. It is understanding — understanding that your life will be different, but that different can be better; understanding that you can accept your pain without becoming your pain; understanding that your life can still have a positive and productive purpose. At this stage, it is time to re-evaluate your life and your lifestyle. When you were healthy you were able to participate in a variety of activities that interested you. Now your energy and physical abilities are limited. Many things in life will catch your eye or spark your interest but only a few will capture your heart. Now it’s time to focus on what captures your heart. Pursue your passion. Let the other things go. Spend your time and limited energy on what is most important to you. You will find your life to be more rewarding and full of purpose than you ever dreamed possible!

Each of you is a unique and special individual, and you will progress through this grieving process in your own way and at your own pace. There is no “right” way to grieve. There is no timetable. Look at each stage as a learning process and a step toward personal growth. Then finally, once you’ve passed through that final stage of acceptance, you can begin to manage your FM instead of letting your FM manage you.