When the death of Apple co-founder Steve Jobs made news on Oct. 5, 2011, people across the nation reacted with shock, sorrow, and admiration for the technology pioneer’s cutting-edge ideas and products. “Steve Jobs changed the world” was a common theme across Twitter, Facebook, and newsstands.
Pancreatic cancer takes the lives of more than 95 percent of patients within five years — and in recent years it has claimed the lives of actor Patrick Swayze and Carnegie Mellon computer science professor and YouTube sensation Randy Pausch, among others.
Still, we were shocked to hear that Jobs had died. One reason for our surprise: Though his seven-year battle with cancer sparked an ongoing rumor mill about his health, Jobs mostly kept quiet about his disease, revealing only minimal information. Whether that was for business reasons (to avoid hurting Apple’s stock price, perhaps) or because he was an intensely private person, we probably will never know. But he’s certainly not the only one — millions of Americans stay hush-hush about illnesses like cancer, diabetes, and depression.
Here’s a look at the most common diseases people keep secret — and why.
Steve Jobs may have kept quiet about his pancreatic cancer diagnosis because of the potential effects it could have on Apple, or because he was an intensely private person. But others keep cancer a secret for another unfortunate reason — stigma.
Why does cancer still carry a stigma for some people? And why do some go to great lengths to hide their diagnosis? “Cancer diagnoses provoke fear, ostracism, and shame,” wrote three-time cancer survivor and cancer advocate Doug Ulman recently on Huffington Post. Ulman cited a study that found that one in every three people in Mexico believe that anyone with cancer “will die an awful death.” Because of this, people with cancer keep it quiet so they’re not viewed as weak or having one foot in the grave.
However, says Jeffrey Harrison, MD, program director of the family medicine department at the University of Nebraska Medical Center in Omaha, cancer should not be kept a secret from friends and co-workers — especially when you’re going through a treatment regimen. It’s better if they know when you have chemo week and that you’ll be anemic, nauseated, and maybe not up to the level they expect. And maintaining strong emotional health during a severe illness (especially through support of your loved ones) has been shown to boost physical health.
A recent survey carried out by Diabetes UK found that nearly 34 percent of people with diabetes in the United Kingdom keep it a secret — 59 percent of these respondents had not revealed their health status at work, and 56 percent of them had not told their friends.
Why? Most of them chalked it up to a fear of discrimination, and some of them were worried that their pals would assume they were living unhealthy lifestyles (type 2 diabetes, the more common form of the condition, is often linked to extra pounds and physical inactivity). Other people choose not to disclose diabetes simply because they think it’s a non-issue, says Dr. Harrison — especially if they are doing what they need to do to control it.
What else did the survey find? More than 40 percent of these undercover diabetes patients said they would benefit from having more emotional support. Having loved ones on your side as you fight a condition is crucial — and Harrison says this is all the more reason to open up. In addition, he notes that letting people know that you have diabetes can help explain some necessary behaviors that others might find peculiar. For example, if you are taking insulin and have to eat on schedule, your co-workers may wonder why you can’t work through long meetings or why you frequently eat small meals.
Living in Silence With Mental Illness
Sure, a chronic or terminal physical disease may be hard to talk about — but one type of disease carries an even greater stigma: mental illness. According to the National Alliance of Mental Illness (NAMI), one in five Americans has a mental disorder — but nearly two-thirds of them live in silence and go without treatment, due to stigma surrounding mental illness. “Unfortunately, it’s still not ‘okay’ to have depression or to be bipolar in our society,” says Harrison.
But mental illnesses like depression, bipolar disorder, and schizophrenia are not something you can just “get over” — these conditions are caused by a combination of genetics and environmental, psychological, and biochemical factors. However, treatment methods are effective and can keep you stable and productive.
You may choose to keep quiet about your condition at work, but if it requires certain accommodations, Harrison says that you should at least talk to your boss about your situation so that you can have the greatest chance of personal and professional success.
The ‘Character Flaw’ of Addiction
A dependence on drugs and alcohol carries one of the biggest stigmas of any disease — that’s because most people assume addiction is something that could have been easily prevented. The good news? A recent survey from the U.S. Substance Abuse and Mental Health Services Administration found that, even though drug addiction stigma is still prevalent, more people than ever are beginning to see it as an illness — not a character flaw.
No matter what the cause, substance dependence is a serious illness that requires treatment. And keeping your dependence on drugs or alcohol a secret isn’t the answer, says Harrison. Once you come to grips with the illness and get treatment, there will be times when you won’t want to participate in certain events or socialize with certain groups of people. Sharing the news about your addiction and treatment with important people in your life can help explain why and encourage them to give you the support you need during this critical time.
Dementia: Difficult to Accept
Dementia is a progressive disease characterized by symptoms that range from mild memory loss to severe cognitive difficulties, which make it hard to manage daily activities without help. No matter what the stage, dementia can be terrifying and difficult to accept.
However, letting people know what is going on with you can help them understand why you’re acting in new and unexpected ways. Sharing your diagnosis, particularly with those closest to you, also allows everyone to talk about the future, help you maintain the healthiest lifestyle possible, and resolve any stigma before you lose the ability to voice your opinion.
Eating Disorders: Closet Conditions
For many people with eating disorders, keeping their condition a secret is actually a hallmark of the disease — they become so successful at secrecy that the very idea of talking about their eating habits is terrifying.
In fact, one newly recognized type of eating disorder — closet eating — occurs when a person binge eats only behind closed doors. Exact numbers are hard to come by, but in a recent study of 1,500 women, 13.7 percent of them admitted to binging one to seven times per month.
If you have an eating disorder — whether anorexia, bulimia, or binging — your life could be in danger; letting other people know what you’re dealing with can help them prepare to respond if you have a crisis. In some situations, family members should be included in therapy, so it’s important to talk openly with them as soon as possible. Getting loved ones’ help is crucial to your return to a healthy lifestyle.
The Shame of STDs
No one wants to fess up about having a sexually transmitted disease — and, in most cases, it’s okay to keep this one on the QT from your co-workers and even your family members (unless you need help with some aspect of treatment).
Here’s who you do need to break the news to: Anyone you are planning to be sexually intimate with — no matter how much you worry it will send him running for the hills. According to the U.S. Centers for Disease Control and Prevention (CDC), millions of people have chlamydia or other STDs, such as herpes, syphilis, HIV, genital warts, or gonorrhea — so, hopefully your partner will be just as honest with you about his status. Through a combination of STD treatment and prevention, you and your partner can still have safe sex.
Afraid of Revealing Asthma
Who would want to keep asthma a secret? Anyone who feels the psychological and physical tolls of the disease, which often hinders people from engaging in activities that could trigger an attack.
If you have asthma, you might think there’s no need to tell people about your condition since you have it under control. Here’s why you should: Sharing your diagnosis will let people close to you know why you’re coughing or having a hard time breathing — and it can prepare them in case they need to help out (should you ever need assistance getting your medications or getting away from a smoke-filled corner of your office building).
Private About Pregnancy
Though it’s certainly not a disease, many women keep pregnancy a secret — in fact, the right time to disclose a pregnancy is a hotly debated topic. The truth will become evident soon enough, but Harrison says it’s best for your employer and your team if you let them know once you have passed the 12-week mark and are at a reduced risk of miscarriage.
Up until that point, it’s only important to share your good news if you are exposed through your work to chemicals or other situations that could endanger healthy living and a growing fetus.
Last Updated: 10/06/11. By Madeline Vann, MPH | Medically reviewed by Pat F. Bass III MD, MPH
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