Coping with Emotions After a Difficult Diagnosis

There’s nothing easy about a difficult diagnosis, such as a serious disease or chronic condition. Your life path and outlook change when you hear words like cancer, kidney disease, diabetes, heart disease, multiple sclerosis or dementia applied to you. The same emotions may apply if you have a loss of vision, hearing or mobility.

It can feel like you’re being forced on a frightening journey with an uncertain destination. Or you may suddenly have a much clearer idea of what your future will be like. While some illnesses or conditions may have a resolution after treatment, others continue for years or for the rest of the patient’s life.

Common Emotions to a Difficult Diagnosis

A patient’s response to getting a major diagnosis is very personal. You may be shocked, angry or sad when you hear the news. You’ll likely be fearful, and feel helpless and overwhelmed. You could even feel a sense of relief that your situation now has a name, and you can make a plan to move forward.

Whatever your initial feelings are, they may change or become complicated in the days, weeks, and months of dealing with the illness or condition. You may move through the emotions of the grief cycle:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

But you may not experience those emotions in that order, and you may not experience all of them. Some people move through the stages of grief sequentially, eventually getting to acceptance. But I’ve seen many people linger in one part of the cycle without being able to accept what has happened to them.

Resources to Cope with a Difficult Diagnosis

If a major diagnosis sends you reeling, there are steps you can take to begin to regain your balance. This isn’t a quick or easy process. It doesn’t take away the emotional pain, but it can help.

• Express what you’re thinking and feeling. A lot of people who get a horrible diagnosis feel they have to stay strong and avoid expressing their emotions, as a way to support those around them.
• Use your support system. Talk with your friends and family. They want to help. If you have a community around you, it’ll be a thousand times stronger than you can be alone.
• If you don’t have friends or family to turn to, tell your care team. There is no shame in that. I’ve worked with many people who are in that situation, and there are plenty of other options for support. Ask your health care provider or hospital staff to connect you with a social worker or counselor with experience in helping people in your situation. Support groups are great, too. Your health care team wants to help you with these resources, but you have to be bold enough to say you need the help.
• Don’t worry about getting the words right. These are new feelings. Some people have never had to describe them and may not feel like they have the words for them. Sometimes we think we’re supposed to have a certain vocabulary. We’re not. Don’t overcomplicate your feelings. You can say, “I’m sad.” You can say, “I’m scared.” That’s enough. It gives another person an opening to respond and talk with you.
• Don’t assume the worst. Turn to your care team for a fact-based assessment of what’s happening to you now and what’s possible for the future. When someone gets a cancer diagnosis, they tend to immediately imagine the worst possible outcome. But a lot of cancers are curable now. New treatments and regimens are available to help people with chronic conditions manage symptoms and progression. That’s why it’s important to look at your own situation — not what happened to your cousin’s friend or your great aunt. Focus on your own unique diagnosis, treatment plan and possible outcomes.

It’s OK Not to Be OK

If you’ve had a major diagnosis or a life-changing medical event — or if you have a loved one who has — my most important message to you is this: It’s OK to not be OK. When someone asks you how you’re doing, don’t automatically respond with “great” when you don’t feel that way. I love it when someone answers honestly and says they’re having a horrible day. Then we can start a conversation. That’s the first step toward making the day better.

Guest Blogger: Alicia Wierenga, MSN-NP, Senior Director, Patient- and Family-Centered Care at UMass Memorial Medical Center.