Managing and Living Well With Chronic Illness

by Gary Gilles

Living with chronic illnessMillions of people have felt the crushing blow of being told they have a chronic disease. You, or someone close to you may be one of them. If so, you are in good company. Nearly one out of every two Americans lives with a chronic condition such as diabetes, arthritis, heart disease, Alzheimer’s, MS, or a host of other incurable diseases. Many live with more than one. And it is not easy.

The most difficult period are the months following a diagnosis. This is when you are particularly prone to feel overwhelmed. Many unanswered questions arise from your diagnosis. These include: How will my life change?, Will I be able to cope?, What will happen if I’m unable to care for myself?, among others.

Every diagnosis prompts a response. And how you respond to the diagnosis is perhaps the most important indicator of how you will manage your condition. Those who resist making changes… to accommodate their illness often fail to adequately care for themselves.

Once you know your diagnosis, the task is to move toward accepting your condition, even though you probably won’t like living with it. It can be done. Over the past 25 years I have spoken with hundreds of people with chronic illness, and have yet to meet one who liked having their disease.

Stages leading toward acceptance

Acceptance doesn’t mean you have to like living with chronic illness. It does mean that you take responsibility for your condition and practice good self-care. But this is a journey and will involve stops along the way. These stops, or stages, are common reactions people have to their diagnosis. Each are normal and common among people with chronic illness. But keep in mind that you want to move out of them as quickly as possible. Lingering too long in any stage can work against your efforts to care for yourself.

Here are the stages we’ll discuss:

  • Shock
  • Denial
  • Anger
  • Acceptance

We will discuss each one along with ways for you and family members to navigate through them on your journey toward acceptance.

 Shock

While not everyone experiences a sense of shock at their diagnosis, many do. It’s most common when you are given news that you are not expecting. For instance, say you go the doctor for chronic fatigue, thinking you might have low blood pressure. After examination and tests you find out you have major heart disease that requires surgery. Most would feel overwhelmed at this news but would respond to it in different ways. Some may feel anxious, but remain in control; others might panic; while still others might feel an emotional numbness overtake them. These are all signs of shock and typically last anywhere from a few hours to a few days.

The feeling of shock is nothing to be overly concerned about if you attempt to move beyond it. The best way to do that is to put your thoughts and feelings into words. Find a trusted family member or friend who knows you well and will offer an understanding ear. Talk about your fears, questions, and struggles. Resist the tendency to “be strong.” The very act of putting words to the swirling chaos you feel inside will calm the storm and give you a new perspective on your next steps.

Denial

Some people skip shock and go right to denial. A person in denial will refuse to accept the diagnosis or make necessary changes in their life. Denial is a convenient way to block out what we don’t want to admit. A good example of someone in denial is a woman I’ll call Martha.

Martha was a law student who was in the hospital because she was diagnosed with diabetes. Her blood sugar was dangerously high. When I spoke with her she defiantly stated to me that, “Diabetes is not going to be part of my life.” When I asked her to explain, she said, “I am not going to take insulin shots, adjust my eating habits and change my life for diabetes.”  I tried telling her that diabetes won’t operate on her terms. To have the best quality of life she needs to work with it, not ignore it. In addition to her diabetes, she chose also to ignore my comments. She firmly held to her opinion that diabetes could be beaten through willpower. Sadly, her denial continued indefinitely and led to many hospitalizations for diabetes-related complications over the next several years.

Breaking through denial requires honesty – self-honesty. Martha wasn’t lying to me during our hospital chats, but to herself. Had she let down her guard and listened to reason, she would, at some point, have embraced diabetes as a reality in her life. And this could have led to responsible action and better management of her diabetes.

Honesty involves separating what is actually true from what you want to be true. Here’s a helpful exercise to foster self-honesty: first, draw a dividing line down the middle of a piece of paper. On one side, write what you want to do about your diagnosed condition. On the other side write what your doctor, family members and others concerned about you are saying you should do. Using colored markers, draw a green arrow connecting the similarities between the two sides. Then, in red, underline the points on each side in opposition to one another. For each green arrow, write what you think will be the benefit. For each red underline, write what you see as the main difference. Once finished, talk it through with a trusted friend to get an objective opinion. By putting both perspectives on paper we are often able to see more clearly where we are confused, scared, misinformed, or just plain stubborn.

If a family member in denial is unwilling to do this exercise, write it out for them. Encourage them to verbalize to participate to whatever extent they are willing. After completing it, try to discuss this with them or give them the paper to read or keep for future reference. There is no foolproof formula for breaking through denial. But generally, empathy and objectivity work better than force and coercion.

When denial breaks, it often leads to anger.

Anger and blame

“So you’re angry because you live with the burden of having an incurable disease?” This was the question I asked Tom in a counseling session while talking about his recent diagnosis of Multiple Sclerosis. At age 35 he was married with three children, a good career, and lots of dreams for the future. Those dreams turned to nightmares when he was diagnosed with MS.

“What are you angry about?” I asked him. “I’m angry that MS is going to change my life forever,” Tom said. “What did I do to deserve this disease?” He went on to berate his physician for not being more proactive, his wife for not understanding his struggle, and God for his apparent cruelty. In short, he was spewing anger and blaming everyone he could think of because he was having difficulty accepting his diagnosis. The real problem was not that Tom was angry but how he was handling his anger.

Anger is a legitimate emotion and a common one in chronic disease. You have an incurable disease that you get tired of managing. You feel different from others because of your limitations. You have more health problems and financial concerns than the average person. And more. Why wouldn’t you feel angry on occasion?

Yet, anger can also be toxic both to you and those you care about. When it turns to attacking or blaming others, it is usually a sign that you feel like a victim of your disease. Victims don’t see themselves as having the power to change their situation. But empowerment is the road out of disabling anger. Here are some ways to engage that empowerment.

  • Take responsibility for your anger. If you blame, ridicule, or spew anger at others, be willing to apologize and restore the relationship.
  • Replace blaming with feelings. Instead of blaming someone with a statement like, “You make me angry because you ignore my needs, try: “I feel angry when you don’t consult me before making plans.” The latter statement is much easier to hear because it doesn’t cast blame.
  • Talk about what angers you. Expressing your anger in an appropriate way diffuses it. Holding the emotion in intensifies it.

The more you practice these tips on anger management, the less angry you will be and the more approachable you will seem to others.

Acceptance

Acceptance is merely coming to terms with your condition. You embrace your illness as belonging to you and no longer try to pretend that it doesn’t affect you. You do have limitations. But you accept these limitations as part of your life and seek to make the best of them.

Acceptance also means that you practice responsible self-care. You take the knowledge that you have and act on it. You don’t compare yourself to others who can do more than you, but focus on doing what you can to the best of your ability. With this comes contentment.

Unfortunately, no one living with a chronic condition is going sustain an accepting attitude all of the time. There will be days of discouragement, maybe even depression. You will have waves of anger, be prone to blaming, or deny things you would prefer to ignore.  But don’t let these human responses to struggle derail your efforts to carry on. Use the suggestions given above to move through the stage back to acceptance.

Finally, don’t be afraid to ask for help. Actively seek the emotional support of those you care about. Research has repeatedly shown that those with strong relational support manage their chronic illness far better than those who try to do it alone.

Put all of these pieces together and you can adjust well to your chronic disease. And in addition, you get a quality of life far surpassing what you expected when you learned of your diagnosis.

Side note: One of my specialty areas is working with people living with chronic conditions. I would be happy to talk more with you about your needs, struggles or concerns. Use the “Contact Gary” tab at the top of the website to send me a message or call 847-520-7523 (x1).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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