When Deanne Basofin was first diagnosed with multiple sclerosis (MS) 20 years ago, she was shocked, frightened, and in denial.
“There was only so much my psyche could take in while facing a lifelong chronic illness,” says the 69-year-old social worker and MS support group facilitator.
She’s not alone. “Denial can be a very common experience for individuals with MS,” says Roshawnda Washington, a social worker and client services specialist at the Multiple Sclerosis Association of American (MSAA). “Because the diagnosis can be difficult to believe or understand, denial can sometimes be the initial reaction,” she adds.
The Role of Denial in Chronic Disease
Denial — difficulty acknowledging the reality of a situation, often one that is painful or frightening — can be both helpful and harmful. According to Beth Kane, a licensed clinical social worker and life coach in Point Pleasant, New Jersey, it’s a fundamental aspect of our basic coping mechanisms and defense systems.
“Denial gives us relief from what can be completely overwhelming and daunting,” Kane says. She likens it to a pressure cooker. “We cover the pressure that’s in the pot so the contents stay under control and more manageable. Instead of suddenly taking the lid off the pot, it can be helpful to vent it a little,” she says.
A diagnosis of a chronic and progressive debilitating disease such as MS is likely to arouse fear, feelings of loss of control, and grief, says Kane, who explains that individuals grieve over the loss of health, independence, and control of their bodies.
“Denial is a constituent in the grieving process,” Kane says. Fear about the present or the future, she adds, “can be so overwhelming that denial acts as a mechanism for coping.”
Denial often occurs upon diagnosis, but it can appear at any time throughout the course of the disease, says Angel Blair, a client services specialist at the MSAA.
“As the disease progresses, denial may arise in relation to impairment of motor and sensory functions,” says Kane, “and may also appear as an individual comes to terms with physical changes.”
When Denial Can Help — or Harm
Surprisingly, denial is not necessarily a bad thing and can actually be a powerful coping mechanism, a buffer that allows you to absorb difficult information at a pace that doesn’t overwhelm you. Kane thinks of it as a mini-vacation, where you can take a break from a reality that can be frightening and devastating.
“Everyone should be allowed periods of denial if it’s not impeding an immediate need for care or decision-making,” she says. It only becomes a problem if it prevents you from moving forward or causes you to act in an unsafe or unhealthful way.
Denial also can be detrimental when it prevents you from reaching out for support, observes Blair. “If you find it hard to come to terms with the disease and understand its impact, you may cause yourself harm by not realizing certain boundaries that have developed,” she adds.
In her support groups, says Basofin, “participants have discussed denial as a healthy defense that protects us and allows us to maintain equilibrium.” But there’s a wide range of responses, she says. “Some people just go into hiding, staying away from anything that reminds them that they have an illness. That’s denial to the max, and it’s accompanied by great fear and isolation.”
You might be more vulnerable to denial if you lack a solid support network, says Washington.
“It’s important to have close relationships and communicate with others, including one’s healthcare team, to maintain accountability about how the disease is affecting you.”
“Denial may also be more problematic for people who lack effective and flexible coping skills, and for those who may have been prone to cognitive distortions before they became ill,” says Kane.
Signs You May Be Stuck in Denial
Although denial tends to wane over time as individuals absorb and accept changing circumstances, some people get stuck and may need help moving forward, says Kane.
But given the nature of denial, it may not always be easy to recognize that you’re experiencing it. Kane points to several telltale signs:
- Reacting explosively to news you don’t want to hear
- Not sharing how you’re thinking or feeling with anyone
- Being unwilling to listen to any viewpoint but your own
- Ignoring sound medical advice
She’s quick to point out that ignoring advice is different from disagreeing with advice and seeking other options and opinions. Still, if you recognize these behaviors in yourself, you may benefit from seeking help, whether by joining a support group or finding a therapist who’s expert in treating individuals with chronic illnesses.
A Need for Compassion and Validation
“From the responses in my support group,” says Basofin, “many people feel a great sense of relief in seeing and talking to others with MS. Support from family and friends is very important and necessary in learning to live with MS, but being with others like you and seeing how they face the disease gives you a sense of commonality and community that is so important,” she adds.
People in denial need to be listened to and given compassion, says Kane. Talking with others can help you by validating your intense feelings. When your emotional responses, including fear, are dismissed, says Kane, it either can drive you deeper into denial or shatter your denial, leaving you with no other coping mechanisms. “Validation,” she says, “opens the door to understanding and acceptance.”
Kane has observed well-meaning family and friends confuse denial with hope or try to force an individual out of denial. “No one should ever have hope dismissed,” she says. “Hope serves as a means for moving forward, and since we cannot see the future, we must not take that away from them.”
Basofin agrees. “First we deny,” she says, “then gradually, as our mental state allows, we start to learn more. Since our future with MS is very much unknown, we have to live our lives by taking charge of our illness as much as possible. Seeking control when MS has taken control is a healthy way to face chronic illness.”
