What is distress?
Distress is a word that has many meanings. Here, we use “distress” to describe unpleasant feelings that may cause problems as you cope with cancer and its treatment.
Distress is common in people with cancer and in their family members and loved ones. It can make it harder to deal with the changes that come with a cancer diagnosis.
Saying that you are distressed can mean that you feel:
The stress of dealing with cancer can affect parts of your life other than your feelings. It can affect how you think, what you do, and how you interact with others.
Some distress is normal.
A certain amount of distress is normal when you or a loved one has cancer. This distress is caused, in part, because of the attitudes and fears people have about cancer. For instance, one of the big fears people have is that cancer means death. But this is wrong. Today, there are more than 14 million people alive in the US who have had cancer.
Still, people are upset when they learn they have cancer – no matter how much progress has been made in treating it. There are many things that suddenly seem uncertain. People have concerns about what may happen to their bodies. They worry about how the people they care about will cope with cancer and all the things that may happen. And they have fears about what the future will be like. People often wonder, “Am I going to die?” and “Why is this happening to me?”
Once you learn that you or a loved one has cancer, you may no longer feel safe. You may feel afraid, exposed, weak, and vulnerable. Such feelings often last through treatment. Anxiety and sadness are common, too.
It’s normal to worry, especially at certain times, such as when waiting to start treatment. “The worst time for me was waiting for that first chemo treatment,” said one patient. “Once it was over, and it wasn’t as bad as I thought it would be, I was OK. I actually felt better because I was finally doing something about the cancer.”
Waiting for surgery is another time of major concern. People often worry about the operation itself, but also about whether the cancer is growing while they wait. Fears about the changes that surgery will cause can be a major source of distress, too. Then there are concerns about work and home life and how they may change. Insurance and financial issues often add to the worries.
For some people, one of the hardest times is after cancer treatment. Rather than feeling happy that treatment is over, they feel even greater distress. One patient put it this way: “I’m on my own now – and I’m just waiting to see what will happen next.”
Seeing the oncologist (cancer doctor) after treatment can be scary. Nearly everyone has some fear the cancer will come back (recur). This is normal, too. “Every time I have aches and pains, I’m sure it’s the cancer coming back – even if it’s a pain in my big toe,” one patient said.
Everything about cancer is stressful.
Dealing with the side effects of treatment – such as tiredness (fatigue), hair loss, weight changes, and how disrupted your life seems – is also stressful. In fact, everything about having cancer is stressful. Being upset and worried are part of it, so a certain amount of distress is expected. But sometimes distress can go from the expected level to one that interferes with your treatment, makes it hard for you to cope, and affects all parts of your life. Here, we will try to explain the range of distress – from normal to very high – and offer some tips on how to handle your feelings in healthy ways.
Your first line of defense in coping with distress is having a cancer care team you feel safe with. Talk to them about how you feel. They can direct you to the help you need. Remember that they are treating YOU, not just the cancer, and they count on you to tell them how you’re doing and what you’re feeling. Remember, no one can do that except you.
Even though most of the information here may seem like it’s for the person with cancer, it can also be useful to the loved ones of the person with cancer. These people are a strong source of support, and their well-being is important, too. If you are a loved one and feel distressed, it’s OK to let the cancer care team know that you need help.