Deal with the Difficult Emotions of Chronic Illness

Is denial a bad thing?

Denial is a normal part of adjusting to the diagnosis of a chronic illness. In the denial stage, we feel numb. We feel as if we have been transported into some stranger’s life or that we are strangers observing our own lives from outside.

At first, denial is good. Denial protects us from thinking about the unthinkable. Denial gives us time to adjust, to come to terms with the diagnosis. Healthy people may perceive this period of denial as a flaw and judge us. Each person has to accept his own diagnosis in his own time and his own way.

The denial that says, “I don’t have it; they are wrong,” is a denial that can only last a few days or weeks at most. After that, denial takes subtle destructive forms.

Wanting a second opinion may be wise. Wanting a tenth opinion when the first nine doctors all agree could be denial (and pretty expensive denial at that).

Not following a treatment regimen can be denial. We get tired of reminders of illness, and conveniently forgetting to take medication or self-manage our illness can be denial.

Pushing yourself beyond your limits is another way of pretending your limitations do not exist. Denial may speak in the words, “What difference does it make anyway?”

Let denial be the short-term buffer it is meant to be, and then move on to learn to manage your disease. Accepting the fact that you have a chronic condition is not resignation and it is not giving in or giving up.

Norman Cousins, a journalist who suffered from ankylosing spondylitis, said, “Never deny a diagnosis, but do deny the negative verdict that comes with it.”

Ankylosing spondylitis
An autoimmune disease that affects the spine and causes the bones to fuse together.

Why am I so angry all the time?

You get angry, angrier than you have ever been. What are you supposed to do with this anger? You can turn the anger inward. But anger turned inward is depression. You get mad at yourself for being depressed and then get even more depressed.

If you do a good enough job of suppressing anger, you’ll end up feeling nothing—bad or good. Either you feel your feelings or you don’t. There is no picking and choosing, no middle ground.

You can turn your anger outward. When you do that, you alienate the very people you need to be there for you. Who wants to be around an angry person?

You don’t even like being around yourself when you are angry. You end up alone. And once again, you get mad at yourself and end up more depressed.

What can I do to manage my anger?

If you can’t repress anger and you can’t express it without alienating others, what are you supposed to do? Accept the fact that you are angry. Buried feelings don’t die. This anger is part of you and you can’t just cut it out and toss it away. Nothing changes until you accept where you are right now.

Words are powerful tools for dealing with anger. Write about what you feel. Talk to a good friend or a counselor. Beat a pillow; yell out loud in the car or when you are alone. Sure, it sounds silly, but what do you have to lose by trying? What do you have to gain? Channel your anger into learning about your condition and managing it. Get involved, and work for a cure. Make a difference.

Journaling is an excellent way to examine, express, and begin to release anger. You don’t need a fancy book for journaling, just a simple notebook, a pen, and some quiet time. Start with an open-ended statement like “I am angry because . . .”; “I feel angry when . . .”; or something similar.

Don’t worry about grammar, spelling, or punctuation. And don’t judge yourself for what you are feeling. The only rule is to keep the pen moving. Try to write for 20 minutes each time. Each time you write, the difficult emotion of anger will lose some of its power.

Difficult emotions have a half-life very much like radioactive substances. Each time you express the emotion it loses half its power until it is little more than a faint background noise.

In the meantime, try to be aware of anger, especially when you feel like you are going to erupt and do all kinds of damage to your relationships with others. The old adage to “count to 10” is good advice.

If you do react inappropriately, apologize the second you realize what you have done. Most people will understand if you offer a prompt and sincere apology.

David J.’s comment:

I know I should probably exercise and eat better. But what’s the use? I’m never going to get rid of this disease. If I am going to have to spend the rest of my life being miserable, I am going to do what I want. At least I can enjoy my chips, soda, and candy.

They are the only pleasures I have left. And those medications? They won’t cure me. They can cause all kinds of problems. It’s no use. I am going to do just what I want to do. I deserve that much.

If I’m never going to get better, why should I bother trying?

For people who have suffered for years with a constellation of symptoms, a diagnosis, having a name for what is wrong, is something of a relief. For many, the initial relief quickly turns to despair. The illness model that most people know is one that fits acute illness.

You get sick, you get treated, then you either recover or you die. The illness model for chronic illness is quite different. You get sick, you finally find out what is wrong, you get treated, and you stay sick but hopefully not as sick as you were without treatment. It’s easy to give up.

While it is true that you will never be “normal” like you once were, or “normal” like healthy people you see, your life is not over unless you decide it is. Your body and your life may look like they are out of control. You feel hopeless, helpless, and powerless. It’s time to let go of either/or thinking.

No one is either totally sick or totally well. Normally healthy people have times when they are sick. People with chronic illness have times when they feel normal. The degree of health that we experience is continuum, not one or the other. Regardless of where you are on that health continuum, you have the power to make a difference in your quality of life.

You may never go back to your “old normal” so you have to create a “new normal.” That new normal can be sitting around having a solo pity party, wishing things were different or it can be creating a new life where chronic illness is integrated into the whole but is not at the center. Once you make a conscious decision to accept the fact that you have chronic illness and it’s not going away, you can turn your attention to being proactive in your medical care, attending to your health, and creating a new life.

What are the symptoms of depression?

Depression, like almost everything else that has to do with chronic illness, is complicated. Depression can have a physical cause. Depression can be the result of pain and fatigue, but depression can cause pain and fatigue as well, setting an endless cycle in motion.

Depression may come as a result of your situation. Loss of work, identity, health, and self-esteem can lead to depression. The journey to acceptance in chronic illness is similar to the journey of grieving for someone you love—but that someone is you and you’re not dead yet.

You grieve for who you were and for lost hopes and dreams. A lot of the time you feel hopeless and helpless. Depression is a stage in the grieving process.

You might not even realize that you are depressed. In a chronic illness workshop, the participants were asked to list symptoms of depression: loss of interest in daily activities, changes in appetite, sleeping too much, not being able to sleep, crying, inability to control negative thoughts, concentration problems, lack of motivation, being short with others, etc.

One participant at the workshop, a take-charge kind of woman, sat in her seat and said through quiet tears. “Oh my God,” she said, “I just realized that I am depressed and have been for a long time.” That was a turning point for her.

According to the Mayo Clinic, symptoms of depression include:

• Loss of interest in normal daily activities
• Feeling sad or down
• Feeling hopeless
• Crying spells for no apparent reason
• Problems sleeping
• Trouble focusing or concentrating
• Difficulty making decisions
• Unintentional weight gain or loss
• Irritability
• Restlessness
• Being easily annoyed
• Feeling fatigued or weak
• Feeling worthless
• Loss of interest in sex
• Thoughts of suicide or suicidal behavior
• Unexplained physical problems, such as back pain or headaches

Not everyone has every symptom. If you suspect that you are depressed, there’s a good chance that you are.

How can I manage depression?

The depression that goes along with chronic illness is normal but only for a while. People with chronic illness go through the same stages of grieving as people do when someone they love dies.

These stages include denial and isolation, anger, bargaining, depression, and finally acceptance. Not everyone experiences these stages in the same order. Each stage is usually revisited a number of times.

If your depression is the result of having chronic illness and is not biochemical in nature, there are some things you can try. Anything you do to stop thinking and start doing can be helpful. Whether it’s cutting your toenails, watching a feel-good movie, or learning a new hobby, doing anything is better than sitting and obsessing about your illness and situation. Phone a friend, and resolve to really listen to the other person.

Don’t use the call as a chance to say out loud all the unpleasant things you have been thinking. Focus on the other person. Listen to your favorite music. Read a book. Take a walk. Plant a flower. Take a bath. Have a nice cup of tea. Think about things that bring you pleasure and pick one that you can do.

Biochemical
Relating to chemicals that are found in living organisms. Imbalances can cause disease and depression.

Change your thinking. What we think causes what we feel. First pay attention to what you are telling yourself. How much of it is negative, hopeless, and helpless? Write these thoughts down. Then write a positive statement that counters each thought.

If you are thinking that you can’t do “anything” anymore, the opposite might be “I can be a good listener to someone in need”; or “Now that I don’t do anymore, I have the time to learn , which I always wanted to do but never had the time before.” Rehearse your new positive statements. Each time the negative statement creeps in, repeat the positive statement you have prepared.

How do I know when to see a professional about my depression?

Everyone has blue periods in their life. The fact that life has ups and downs is not news. But if you try strategies to lift your depression and if the symptoms of depression last for more than a few weeks, you will want to get professional help. Ask your doctor for a referral to a psychologist or psychiatrist so that you can be evaluated for depression.

A good mental health professional will be able to determine whether your depression is biological, situational, or both, and guide you in choosing treatment options. And, as it is with chronic disease, the treatment of depression may involve some trial-and-error attempts on the part of patient and practitioner. For some people, there is a stigma attached to mental health counseling.

They think it is only for those who are weak and crazy. Depression is just as real a disorder as insulindependent diabetes or a broken bone. You wouldn’t try to treat those on your own, would you? It is the strong person, not the weak person, who has the courage to ask for help when needed. It is the sane person, not the crazy one, who makes a decision to relieve his own suffering.

Psychologist
A mental health professional who uses talk therapy and other techniques but does not prescribe medication.

Psychiatrist
A mental health professional who can prescribe medication to treat mental and emotional problems.

Why am I having trouble thinking and remembering?

Difficulty thinking and remembering can have several causes. There may be a biological cause for your cognitive problems that is based in the disease itself.

The medications that you take to manage the disease or its symptoms may be the cause. Or the cause may be situational, brought on by the many stresses of living with a chronic medical condition. More than likely it is a combination of all three.

Autoimmune diseases can cause inflammation in the brain, affecting the ability to think clearly. Neurological disorders can skew the messages that travel from nerve to nerve. A quick search on the Internet turned up 371 diseases that can cause people to have problems with forgetfulness, trouble concentrating, confusion, and disorientation.

Autoimmune disease
Any disease in which a person’s immune system cannot tell the difference between viruses, bacteria, or parasites and the healthy self.

Neurological disorders
Problems affecting the nervous system.

Medications that carry a warning that they may cause drowsiness and that you should avoid operating machinery after taking them can cause cognitive impairment, too. Pain medications, beta blockers, and steroids can all be culprits, among many others.

The constant stress of living with the uncertainty of chronic illness, pain, fatigue, and depression can all interfere with your ability to think clearly. If you add the challenges of loss of income, inability to pay for medical care, and changes in relationships resulting from chronic illness, is it any wonder that you have a hard time concentrating?

Why don’t my prayers work?

Whether or not people profess faith in God or follow a spiritual path, they find themselves trying to bargain their way out of desperate situations. The old adage, “There are no atheists in foxholes” could easily apply to chronic illness. One of the stages of grieving—and remember we are grieving for our own losses—is bargaining.

Whether it is bargaining with God as we know God or bargaining with something as vague as the cosmos, people will try to bargain their way out of the illness. The process starts when the patient looks back at his or her life and decides that his less-thanperfect lifestyle or attitude is the cause of the sickness. The next step is making promises about future behavior in return for relief from the sickness.

Bargaining sounds something like this, “If I get better (or You make me better) I promise I will (eat more vegetables, be nice to my neighbor, be a pleasant person, etc.). Bargaining makes some faulty assumptions. The first is that we did something to deserve our illness. The second is that our illness was inflicted on us as some kind of religious or cosmic punishment. The third is that whoever we are bargaining with will remove our sickness the same way that it was “given” it to us.

Whether or not you contributed to your illness is only important in that you have learned to change your behavior. What happened has happened, and nothing can change it. While prayer and meditation can be very helpful in managing chronic illness, playing “Let’s Make a Deal” is not.

Fortunately, the bargaining stage usually doesn’t last very long. Instead of spending your energy figuring out what constitutes an enticing offer, put your energy into something you know will pay off and make a plan to manage your disease.