Don’t Let Symptom Denial Threaten Your Life

By Susan Keller

From Psychology Today, 8-24-21

Key Points:

People sometimes deny symptoms of illnesses—such as cancer—which can hamper diagnosis and treatment.
Reasons for symptom denial include fearing the outcome and not wanting to be “weak” or waste others’ time.
People should seek medical attention—even a second opinion—if they notice any of the potential signs of cancer, such as persistent soreness or indigestion, among others.

Shortly after noticing the lump on the left side of my neck, I mentioned it to my Ob/Gyn. Without even giving it a glance, he assured me I was simply fighting a virus. Of course, that’s what I wanted to hear: A virus that would disappear as soon as it had arrived. And, with my hair down—the way I always wore it—the lump was hardly there at all.

This phase of contented denial lasted almost a year until other signs began to indicate that something was wrong. Hindsight is so revealing. Looking back, my symptoms glared and flashed in neon, and yet I managed to deny or rationalize every single one.

Like shortness of breath.

My husband and I began a steady uphill trail that I’d hiked dozens of times without much effort. But after less than a half mile, gasping for breath, I had to stop. Not to rest—I’d already done that—but to turn around and go home. This was like Pavarotti pushing himself away from the table without finishing his Primi course. It just didn’t happen. I rationalized the virus that my ob/gyn had “diagnosed,” menopause (boy is that a catch all!), or a funky biorhythm day. Whatever that is.

Besides shortness of breath, I had night sweats. Yep, that symptom got dumped right into the menopause bucket. I had agonizing leg and foot cramps that I attributed to too much exertion (which was ridiculous since I couldn’t exercise). I’d lost weight without dieting. Not that this upset me, but it was odd. Lastly, I had facial swelling. (Menopause, again, what else?) I asked my husband, “Do you think I look different?” He said, “No, Honey. You look great.” Getting progressively puffier, I asked again. Finally, the third time, he admitted, “Yes, you do look a little different, but so do I. We’re all getting older.”

We joked about getting hit by the old-age truck—how aging didn’t happen at a steady rate but sometimes just came along and walloped us. Was I comatose to have so thoroughly rationalized all of these symptoms into a few convenient categories that I could do nothing about? Menopause, after all, is not controlled with diet, exercise, or attitude adjustment. I simply didn’t make the connection that these symptoms could have anything to do with the stubborn little lump on my neck. Or—more honestly—I didn’t want to; this is a classic sign of denial. Lastly, I didn’t want to be perceived as a malingerer; being a hypochondriac is totally against my psychological make-up.

Understanding the role denial plays in the diagnosis and outcomes of cancer

Denial is a psychological mechanism for coping with the stress of painful or threatening thoughts, feelings, or information. Denial can also provide people with time to process distressing information. ¹

In some contexts, denial can be psychologically adaptive. But in the context of cancer, denial can:

Impede cancer prevention, e.g., an individual doesn’t want to “believe” that smoking can cause cancer
Delay cancer screening and early detection
Impede medical attention and treatment
Increase noncompliance with medical instruction

While more research is essential, initial studies indicate that denial is a risk factor for cancer because it can negatively affect disease course and survival, and even depress immunocompetence. ²

Becoming aware of who denies and why

According to a survey from the University of Surrey, almost half of cancer patients ignore early warning signs. When asked why they didn’t seek help, people with potentially serious symptoms gave reasons that ranged from fear of the outcome to not wanting to make a fuss. Both men and women said they were reluctant to waste their doctor’s time over something they’d decided was trivial; and many believed that they should just be strong and tough it out.

Others used busyness or competing priorities as reasons for not checking in with their doctors; and women with lower education were more likely to cite busyness as a reason for not seeking help. This may be especially true for people who are self-employed without benefits, afraid to miss work, or worry that their job may be in jeopardy if it turns out they really are sick. People who live in poorer communities are more likely to be diagnosed late, possibly because they’re more likely to ignore their symptoms due to concerns over lost income. ³

But denial can’t go the distance. When there is truly something wrong, we don’t get better. Nor did the lump on my neck simply disappear. In addition, I awoke one morning with searing back pain. Without including the lump in my list of oddball symptoms, I turned to Google. Diagnosis: a kidney infection. Off to my primary care doc for a bottle of antibiotics. I described my symptoms, again without mention of the lump, and she ordered a urinalysis. But as her hand was on the doorknob and she was leaving the exam room, I blurted out, “I have a lump.” I’m not even sure why I said this as I still wanted to believe it was only a virus. She turned around, a crease between her brows. Twenty minutes later, she diagnosed me with stage 4 lymphoma.

Further tests revealed that I was on the verge of a heart attack or a brain aneurism because my marrow was 98% cancerous. This malignant mush inside my bones prevented red blood cells from forming and carrying oxygen. Here’s the really frightening thing—I felt basically okay. No, I couldn’t walk up a two-mile grade, and I had severe back pain, but a heart attack or brain aneurism? No. Cancer? No way. This is important. I had no idea that I was on death’s door, but I was.

Seek medical attention—even a second opinion—when you notice any of the seven potential signs of cancer

Change in bowel or bladder habits
A sore that does not heal
Unusual bleeding or discharge
Thickening or lump in the breast or elsewhere
Indigestion or difficulty in swallowing
Obvious change in a wart or mole
Nagging cough or hoarseness ⁴

We can all make up reasons to avoid seeking care, such as:

Negative evaluations of physicians or healthcare organizations
A low perceived need for medical care e.g., “My symptoms will just go away”
Cost, lack of health insurance, or time constraints ⁵

In addition to these traditional barriers to seeking care, some cancer diagnoses are being delayed because of COVID. Some patients don’t want to “bother” providers, who they believe are treating COVID patients. Others fear they could get the illness in a doctor’s office. Dan Theodorescu, MD, PhD, director of Cedars-Sinai Cancer, said, “I strongly encourage anyone who suspects they might have cancer to get in touch with their physicians, as the use of telemedicine or other available physical-distancing tools will allow them to get medical help immediately.” ⁶

Please, pay attention to those peculiar signs your body might be sending you. Don’t rationalize. Don’t deny. You know your body. Get unusual symptoms checked out. And if someone tells you it’s nothing but it doesn’t go away, get a second opinion. If I hadn’t blurted out about the lump and gotten my doctor’s attention, I wouldn’t be here to tell this story.

Susan Keller

Author & Essayist

Don’t Let Symptom Denial Threaten Your Life