When I first became sick 20 years ago, I never imagined the winding road ahead of me and what was in store for myself and for my family. I remember thinking once I received my CFS diagnosis and was told there was no cure and that I would live with it for the rest of my life, how will I do that? How will I live the next year with this thing yet along the next 10, 20 or 50 years? But here I am – 2o years later – still living with it and growing every day as a person because of it.
Part of the process of adjusting to chronic illness is going through different stages and these stages can take anywhere from months to years to work through. It’s a long, emotional road that most people don’t realize we walk and it’s not just a simple diagnosis and treatment plan we have to adjust to and that our families have to adjust to. Everything we once knew as our life has forever been altered tremendously and dealing with that is an extremely long process. So let’s take a look at each stage of the adjustment process thoroughly:
Denial. The first stage of adjusting to chronic illness is denial. Once a patient has finally been diagnosed with either CFS or Fibromyalgia, they initially feel relief because most have been trying to find out what’s been wrong with them for years. At the same time, the patient may be in shock or disbelief because they have an illness with no cure and with no proven effective treatments.
During the denial stage, the CFS/FM patient may be easily swayed and taken advantage of with all of the so-called “medical cures” and “natural treatment cures” out there on the Internet. Patients may also continue doctor shopping during the denial stage because even though they now have a diagnosis, they keep hoping that there is something else wrong that is not chronic causing all of their problems. Patients can lose an extreme amount of money during the denial stage.
Patients may also continue trying to live their lives as normally as they did before, thinking that if they just keep pushing themselves, the illness somehow won’t be there. We think that if we just keep going and going, we can somehow make it all disappear. We think that by being stubborn we can show CFS & Fibromyalgia that we are the boss. Well, it doesn’t work. Even if you are able to push yourself for a few months or a few years, the disease always wins out, the body shuts down, and then we beat ourselves up because we thought we could continue doing it all.
Fear. The second stage of adjusting to chronic illness is fear. I remember the terrible fear of the unknown – what was going to happen to me? What was going to happen to my body? Would I die young? Would I be able to continue working? How would I explain to people what CFS is when I don’t understand it myself? There are so many fears and thoughts going through your mind it is overwhelming. One of my worst fears and worries to overcome was just trying to live from day to day – what was each day going to bring? I lived my life scheduled. I scheduled everything – did everything the same times, every day, every week. I loved routine and that is how I functioned best. With CFS and Fibromyalgia, there is no scheduling, there is no routine. You don’t know what you will be able to do from hour to hour, let alone from day to day. The anxiety and stress of having to change such a big part of myself was immense.
It is usually during the fear stage where the patient will dive into learning as much as he or she can about CFS and Fibromyalgia. Getting reliable facts about your illness can help to calm your fears and any fears your family may have as well. If you can get involved with a local support group or an Internet support group that is specific to your illness, you won’t feel so alone and this will help relieve fear and worry also.
Anger/Frustration. The third stage of adjusting to chronic illness is anger and frustration. This phase is common for the patient and for the family members. The CFS/Fibromyalgia patient will feel angry or frustrated because they can’t do the housework, outside work, etc. The family members will feel angry/frustrated because they have to do the housework and other work. It is frustrating when there are children involved because they don’t understand why mom or dad can’t play. Mom or dad are frustrated because they want to play more than anything but their bodies won’t allow it. It’s an awful, useless feeling.
Typically during the anger phase a CFS/Fibro patient will continually ask themselves, “Why me? This isn’t fair. What did I do to deserve this?” Dr. Bruce Campbell, a chronic illness educator (http://www.cfidsselfhelp.org), says that anger can be a positive thing for CFS & Fibromyalgia patients:
Anger can have positive effects if it motivates you to find solutions to your problems, but it can be destructive if it is expressed in a way that alienates you from others or drives away people who want to help.
Talking to someone or getting help from a neutral party can be effective. Many chronically ill patients and their families will seek the help of professional counselors to learn how to cope with what they are going through and to understand what each other is going through. I have went to counseling a few times over the years to help deal with the effects of chronic illness. The severity of CFS & Fibromyalgia and the daily impact on our lives is such that it gets unbearable at times. Having a neutral party to vent to who isn’t trying to fix the problem that can’t be fixed (which is what most husbands do) and having someone to talk to besides friends and family (because they let us and everyone else know soon enough they don’t want to hear it) is what we need many times.
Grief /Depression. The fourth stage of adjusting to chronic illness is grief and depression. We grieve for the loss of our old lives because everything has now changed. CFS & Fibromyalgia patients lose many of their friends and even family members to their illnesses and it is like we grieve for the death of a loved one – and we do in a sense. We lose an entire life and identity when CFS & Fibromyalgia strikes so the grieving and depression are real. Dreams are gone, incomes are gone, once-loved activites are gone. By now, the shock has worn off and we realize that no matter what we do, we will always have this illness and even though we may be able to do things to make life more bearable, we will always be sick. We will always be the “sick one” in the family, or the “hypochondriac” in the family, or the “buzz kill” at the parties, or whatever it is our family and friends refer to us as. It’s a grieving process for the family members we live with, too. They don’t have the same mom or dad, the same spouse, and their lives have been turned upside down.
Bruce Campbell says about depression in chronic illness:
The signs of depression may be obvious or subtle. A persistent mood of pessimism or thoughts of suicide are clear signals of depression and should lead to prompt professional help. (See “Killing Me Softly: FM/CFS & Suicide.”) But depression may be less obvious, indicated by signs such as a higher than normal level of fatigue, sleep problems, lack of interest in activities or friendships that used to bring pleasure, unintended weight change, and an increase in anger and hostility.
Depression is often treated with a combination of self-management strategies and professional help. The latter involves counseling, medications or both. Self-help techniques include exercise, stress management, pleasurable activities, strengthening relationships, problem solving and changing your thinking. The last involves learning to reframe you thoughts so that they are both more realistic and hopeful.
For working through grief, Campbell recommends:
What can help you move through and beyond loss? In addition to the self-help strategies discussed in the last several sections, consider the following:
Use problem solving. Respond to the emotions of chronic illness by problem solving. By adopting self-management strategies, you can regain control and begin to move forward.
Keep structure in your life. Having a routine provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss.
Avoid stress. Having to adjust to the many changes brought by illness is traumatic. In a situation in which you are already overloaded emotionally, it’s best to avoid people and situations that add more stress.
Respond positively to self-pity. Almost everyone involved with chronic illness occasionally feels sorry for themselves. It’s not surprising that people sometimes feel overwhelmed by emotions, given the losses and stresses brought by long-term illness. Here are three ways to fight back.
1) Recognize self-pity is a part of serious illness. Just as symptoms wax and wane, so do emotions. Acknowledging that self-pity is happening can take some of its power away. You might say something like, “Oh, there’s self-pity again” or “I see that I’m feeling sorry for myself today.” Also, it can help to say consoling things like, “I’ve felt this way before and it’s always blown over, so probably it won’t last this time either.”
2) Connect with others. Reach out via phone, email or in-person. Sometimes just being in touch can change a mood. At other times it helps to have your mood acknowledged.
3) Help others. Shift your attention off yourself onto what you can do for your family, friends or others in your life.
Recognize grief is a long-term process. You may experience grief repeatedly as you and the family member who is ill move through the stages of life. Depending on when your family member became ill, you might feel loss at several times. You may experience grief if you remain childless while others become parents, if you are not able to provide the parenting you hoped, or if you can’t have the career or the retirement you had planned.
Acceptance. The final stage in adjusting to chronic illness is acceptance and learning how to adapt to life with CFS & Fibromyalgia. It normally takes several years to a decade (or longer for some) to get to this stage. At this stage, the patient knows that they will never have their old live back again, they have begun to adapt to their new life with illness, and they adjust their dreams and goals according to what they can physically do now.
Acceptance does not mean that we have given up or given in to our illness. It means that we have accepted the fact that we are sick and that we physically and emotionally have to make serious changes in every aspect of our lives in order to survive, just as someone with MS, cancer, or other serious illness does. I never give up on myself and I never give up on life. But I’m not about to go out and try to work a 5o-hour week, clean my house from top to bottom daily, and all of the other zillion things I did before I got sick to try and prove a point. I have accepted the fact that I can’t do those things anymore and that my body will not allow it. It’s not being negative – it’s reality, it’s a fact. I love how Bruce Campbell says that acceptance involves the willingness to build a new life. He discusses a great analogy on acceptance from one of his self-help groups. The woman wrote an essay, “Welcome to Holland”, where she says that having CFS was like planning a trip to Italy but when the plane lands, you’re told “Welcome to Holland.”
“Holland!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy.” But there’s been a change in the flight plan. You have landed in Holland. And there you must stay.
The important thing is that it’s just a different place. You must buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would not otherwise have met. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there a while, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
So, welcome to Holland. Along with the patient in your life, you have landed in an unexpected destination. You have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have probably lost some companionship and, instead, may have taken on new responsibilities. But, like the person in our class, you have a choice to dwell on what you have lost or to seek out new possibilities.
Repeating the Process. I have personally found over the years that I will go through these stages over and over again – most of them anyway. Normally after a flare, I will find that I will go through the anger, grief and acceptance stages but I get through the anger and grief stages much quicker than what I used to. The fear stage will still hit at times also, particularly when a flare affects my hours at work and I have to cut back for a while. I will go through the fear and worry of financial loss and will fear if this flare will be the final kicker that will knock me on my butt for good.
While we may not be able to change the fact that we have CFS & Fibromyalgia, we can build a new life that is still rich and full – it’s just not the same as the old life. We have to create a new normal for ourselves because we deserve it!