After the Diagnosis: Facing Life With Fibromyalgia
Do you remember how you felt when you first heard your diagnosis - fibromyalgia? Fear? Relief? Confusion? Uncertainty?
My first reaction was relief. After seven years of suffering, I was relieved to finally have a name - something I could learn more about and hopefully combat. For anyone who has suffered for a long time without a diagnosis, relief is a common first-reaction.
Now that fibromyalgia is often diagnosed more quickly, I hear from a lot of people whose first response is fear. They’ve heard just enough about fibromyalgia to know it is a painful condition and they feel like their worst fears are being realized. Just the word ‘pain’ is enough to frighten most of us.
Regardless what our initial reaction might have been, it’s not long before we all come face to face with the reality that our lives have changed and will probably never be the same again. We are filled with questions about what is ahead. What does our future hold?
At this point, whether we’re aware of it or not, most of us go through a grieving process. We tend to think of grief as a reaction to the loss of a loved one through death, however, grief is actually a reaction to any significant loss. With a chronic illness like fibromyalgia, it’s important to grieve the loss of our old life - the life we lived before we got sick and the life that we had pictured for our future. It’s only through grieving the loss of our old life that we can begin to build a new life. Although that life will be somewhat different than we had planned, it can still be a very rich and fulling life.
Most experts identify five stages of grief. Of course, grief is an individual experience and doesn’t follow a prescribed timeline. You may move through one stage very quickly or even skip it entirely. You may linger in one stage longer or find yourself moving back and forth between stages. It’s important that you allow yourself to experience each stage as it comes; but it’s equally important that you don’t allow yourself to get stuck in any one stage indefinitely. The key is to keep moving.
Following are the five stages of grief and tips to help you move through each stage:
Shock, Denial, Disbelief
When you first learn that you have an illness for which there is no known cure, it can be difficult to accept. It’s not unusual to feel like the doctor must be wrong; surely there’s another explanation for your symptoms. It’s hard to believe this could really be happening to you. Elizabeth Kubler-Ross, who first identified the five stages of grief, said, "There is a grace in denial. It is nature’s way of letting in only as much as we can handle."
Moving through: Although you have a diagnosis and may have heard a little about fibromyalgia, you probably know very little factual information about it. The best thing you can do at this stage is to educate yourself. Read everything you can find from reliable sources on fibromyalgia. The more you know, the more control you feel you have and the less scary it seems. Here is a good place to start: Fibromyalgia
When the reality of how significantly your life has changed sets in, you may be angry - angry at God for allowing this to happen to you, angry at your doctors for not diagnosing you sooner, angry at your family and friends for not understanding what you’re going through.
Anger is a necessary part of grieving and can actually give us strength. Anger can be a strong motivator. However, over the long run, dwelling on your anger will increase your stress level and make you feel worse in the end. It can also isolate you from people when you most need them.
Moving through: Try to channel your anger into determination. Set your mind finding the combination of treatment options that works best for you.
At some point in the grieving process, you may be tempted to try to make a deal with God. "If you heal me, I’ll volunteer at the local mission every week." It’s a natural response. You’re searching for some way to make things go back to the way they were.
Underlying the desire to bargain may be some feelings of guilt. Perhaps you feel like something you did or didn’t do may have contributed to your illness. It’s normal to look for a reason when something bad happens in our lives - to try to make sense of it.
Moving through: It’s important to understand that fibromyalgia is not a punishment for something you’ve done wrong. It is simply one of many illnesses that exist in this world.
4. Sadness, Depression
As the realization that you’ll probably have this condition for the rest of your life sets in, it’s not unusual to experience sadness and depression. Your lifestyle has changed and you may no longer be able to do some of the things you once enjoyed. Your future may seem like one giant question mark. Who wouldn’t be at least a little depressed? Depression is a natural response to significant loss.
This stage of grief is often the most difficult to move through. Along with depression can come feelings of hopelessness as well as a substantial decrease in energy. You may feel like going to bed and just staying there. You may wonder how you can possibly face the rest of your life with this illness.
Let yourself feel the sadness. It’s ok to cry as much as you need to. While sleep and plenty of rest are good things, staying in bed or sitting in a recliner all of the time are not. If you don’t move around regularly, your muscles will get stiff and your pain will increase.
Moving through: Remember that you will have some good days and some bad days. Although at first it may seem like mostly bad days, as you learn more about what triggers flares, what makes you feel better, and which treatment options work best, the more good days you will have.
If your depression is severe or you are having suicidal thoughts, please talk with your doctor. You may have a chemical imbalance that can be helped with medication. And don’t hesitate to seek professional counseling. It can really help to have some guidance as you navigate the changes and new challenges you are facing.
This would also be a good time to reach out and connect with other fibromyalgia patients. Thanks to Web sites like this and online support groups, you can find support and encouragement from others who are going through the same things you are without having to leave your house.
Be open to adjusting your expectations. Even though your life may not take the direction you had expected, it can still be very good. When all is said and done, you may find that your life has turned out to be much better than you could have imagined.
5. Acceptance, Re-evaluation
Acceptance is not resignation. It doesn’t mean you’ve given up. Acceptance is recognizing a new reality and learning to live in it. Acceptance is understanding - understanding that your life will be different, but that different can still be good; understanding that you can accept your illness without becoming your illness; understanding that your life can still have a positive and productive purpose.
Moving on: Acceptance isn’t a stage of grief that you move through; it’s the stage that enables you to move on with your life. Once you’ve reached the stage of acceptance, it’s a good time to re-evaluate your life and lifestyle.
Chances are, when you were healthy, you were involved in a variety of different activities that interested you or you felt you "should" do. But with limited energy and physical ability, it’s time to focus only on what is most important to you. You may be surprised to find how much time you used to spend doing things that didn’t really mean all that much to you. When you concentrate your limited physical resources on accomplishing your top priorities, I think you’ll find that your life is more rewarding and full of purpose than you ever dreamed possible
The Stages of Grief. Memorial Hospital. Towanda, Pennsylvania. Retrieved 12/29/2010.
Kubler-Ross E., Kessler D. The Five Stages of Grief. Grief.com. Retrieved 12/29/2010.
Karen is the Co-Founder of the National Fibromyalgia Association. She wrote for HealthCentral as a patient expert for Pain Management.