Facing a New Diagnosis

Learning about a new diagnosis might just be the most important crash-course you'll ever have to take. Find out how others learned to live with chronic illness.

By Jessica DuLong

It's easy to think about chronic illness as something that happens to other people. Caught up in the everyday, it's hard to imagine being healthy one day and ill the next.

But sometimes the unthinkable happens. What if what happens to "other people" suddenly happens to you?

When the tests come back positive for a chronic illness, you want answers fast. How serious is it? Where did it come from? What do I do now?

"The first question many people have is 'is it going to kill me?' Then, 'how is it going to affect my life?'" explained Mary Klinnert, Ph.D., pediatric psychologist and researcher at National Jewish Medical and Research Center. "Getting information is a part of the process of being able to manage emotions."

But in seeking answers to all your questions, it is easy to lose track of how you feel.

"Getting a new diagnosis is a whole new thing to deal with," said Klinnert. "There's ambiguity and fear."

Because each person and each situation is different, there is no single way to respond to facing a new diagnosis.

"There is always a range of emotional reactions," said Klinnert.

For many people the diagnosis itself — learning the cause of the problem— can be a relief. For others, it can be a frightening beginning to a long healing process. For others still, there are mixed emotions. This was the case for Gary Gilles.

When he found out that his nine-month-old son had diabetes, Gilles felt relief. "I knew people with diabetes and they lived."

But there was also fear, "I didn't know what it was about."

As he and his wife learned more about diabetes, they became overwhelmed by the flood of information.

"The more we learned, the more burdensome it became," said Gilles. "This wasn't the kind of thing we could just bandage up."

One of the most difficult aspects of facing a new diagnosis is the shock of being caught off guard. You may even know there's a history of the disease in your family, but it's common to assume that it-can't-happen-to-me mentality.

"It's normal and natural to expect to wake up healthy tomorrow," said Klinnert. "Then something happens."

Lying on the table for her annual gynecological exam, Maureen Johnson did not expect to hear that she had fibroid tumors.

"You go into a routine exam and you find out you have this disease," said Johnson. "And even though it is not life-threatening, it's upsetting news."

Although Johnson had noticed a slight bulge in her abdomen, she hadn't fully considered what that could mean. "I kind of set it aside. It wasn't that noticeable. The capacity for denial is amazing."

Johnson was expecting to hear what she'd always heard before: that everything was normal.

But after the diagnosis, she was unsure of where to turn.

"I had a great deal of discomfort talking about it," said Johnson. "I had a great deal of shame and embarrassment … I felt very isolated."

When you're caught amidst the flood of questions and uncertainties that arise, it can be easy to forget that support is an integral part of healing.

"People need to come to terms with it," said Klinnert. "That's when they really need other people, whether they see a professional counselor or support group. People need to get through it before they can do what they need to do for treatment."

Several months after their son's diagnosis, Gilles and his wife discovered that managing their son's illness had dramatically changed their lives.

"Every hour of every day we had to be thinking about it," Gilles explained. "We started to feel like we were burning out."

The pressures of injections and glucose checks began to strain their relationship. "We started to get short with one another. After the novelty wore off, we started to feel the tension."

So, they joined a local parent support group. "We met other parents and that helped to normalize our experience. We had no idea whether what we were doing or struggling through was normal."

And they found that it was. Sharing their story with others and hearing stories in return helped them to realize that they weren't alone.

Some people turn to friends and support groups for comfort, others may find it hard to talk face to face. This was the case for Johnson. Uncomfortable discussing her illness with her friends, Johnson went online.

"That was a way to deal with it without being personally involved, kind of anonymously," Johnson said. "It's a long process coming to terms with an illness. As you get more comfortable, you start talking about it a little more."

Klinnert agrees. "Chat rooms can be an extremely helpful means of support."

And sometimes more than that.

People often turn to the internet to find information about prognosis, treatments, alternative treatments, or as Klinnert put it, just about "any possible way to increase the odds."

Sometimes just getting that information from other people going through the same thing can be just what the doctor ordered.

With all the information out there, however, nothing can replace tried and true medical care.

"The most important thing is to have a doctor you trust," said Klinnert. "People need to have a doctor they can work with, especially through a difficult illness."

According to Klinnert, people coping with a chronic illness should ask themselves if they believe their doctor, if they feel he has knowledge in the field, and if they can ask him questions.

Klinnert emphasizes one last piece of advice.

"A good working relationship with a physician is crucial."

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