How stigma and hiding MS can hurt a patient's health

December 1, 2016 Bobbie (Barbara) J. Severson, ARNP

People consciously, and unconsciously, conceal things about themselves for a variety of reasons. People with chronic diseases such as multiple sclerosis often hide their condition because they fear being stigmatized.

Earlier this year, The International Journal of MS Care published a study that looked at why people with MS hide their disease and how this concealment can actually be harmful.

Hiding a disease can be harmful

Often, MS symptoms are invisible to others. As a result, people frequently try to hide their disease from coworkers, friends and family. 

Hiding a disease may prevent discrimination and stigma, but it also can be very stressful. 
People who hide chronic conditions may not get the social support they need and they may be at greater risk of depression, according to the study. As part of the strategy to conceal their condition, people with MS may avoid medical appointments and delay starting treatment. In the end, this can lead to a more rapid progression of MS.

The study found:

• People with a more recent diagnosis of MS were more likely to hide the disease. 
• People who hid MS were more likely to drink heavily.
• Hiding MS requires constant effort, which causes stress.
• People in this study worried about being stigmatized if they told others of their disease, and those who did reveal their MS felt stigmatized and isolated.

Stigmas can also hurt health

Unfortunately, just like hiding a disease, stigmas and their effects can hurt a person’s mental and physical health. The study noted that people with chronic diseases often feel “social stigma,” which marks a person as “spoiled” and valued less than “normal people.” Feeling stigmatized is associated with:

• Lower self-esteem
• A perception of less social support
• Psychological distress
• Greater depression and anxiety 
• More social conflict

Health gains compromised

These problems can create stress that taxes a person’s immune system and undermines his or her dedication to treatment and staying as healthy as possible.

The study notes that having MS is beyond a person’s control and suggests that this should make people with MS less a target of stigma. Unfortunately, this isn’t so and previous studies reached the same conclusion, according to the researchers.

Since hiding a disease and revealing it can both cause emotional distress and health problems, what should a person with MS do? This might be a question to discuss with a trusted loved one or expert provider.

Learn more about the study

The researchers say more work is needed to determine how hiding a chronic disease such as MS, and stigma once a disease is revealed, contributes to health problems.

You can read the study, “An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis,” here.

If you believe your health is suffering because you are hiding MS or because of stigma, the MS Center at Swedish can help. We have comprehensive services, including support groups and counseling, for people with MS. To get the treatment and help you need, call 206-320-2200 to schedule a consultation with one of our providers.

This article is from the Winter 2016 issue of Life to the Fullest, the newsletter from the Swedish Cancer Institute (SCI) dedicated to those with cancer, cancer survivors, and their family members and caregivers.

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