Hiding an MS Diagnosis Is Way Too Common — Something Has to Change

Fear of discrimination and stigma causes a third of people with MS to hide their diagnosis.

The symptoms of multiple sclerosis (MS), from visual disturbances and fatigue to mobility and sensory impairment, can influence our interpersonal lives, mental health, and work prospects.

A lack of understanding, which contributes to social stigma, has a resounding impact on people’s lives.

Because of the stigma — and because MS is often an invisible condition — many people choose to conceal their diagnosis for fear of discrimination.

A 2021 survey by the MS Society in the United Kingdom found that a third of people with MS kept their condition hidden. One in 10 of those people kept it a secret even from their partners, and over half haven’t told colleagues for fear of reprisal.

There’s a misconception that all disease is preventable and that, somehow, if you have a chronic condition, you did it to yourself.

However, it’s widely accepted that there’s a genetic predisposition to MS that’s “switched on” by external factors, such as the Epstein-Barr virus or low vitamin D levels.

Despite this, stigma persists.

Living with a life-changing chronic condition can be challenging enough. We don’t need shame and stigma from others holding us back further.

It’s time that society switched its narrative around what it means to live with MS — so everyone can get the care and support they need.

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Hiding a diagnosis can be harmful to mental health

People who opt to conceal having MS often say they’re afraid that people will pity or stigmatize them.

This was the case for Stephen Heaney when he got his diagnosis 10 years ago at the age of 26.

“I didn’t want my friends and colleagues to treat me differently or take pity on me. I didn’t want anything to change,” he says. “At the start my symptoms weren’t too bad, so it was easy to hide. I hid it from everyone except my parents.”

With MS, the immune system attacks the myelin sheath, the layer protecting the nerve fibers. Damaging the nerves much like a frayed electrical cord, this affects the messages transmitted to and from the brain.

Of people with MS, about 85 percent have relapsing-remitting MS (RRMS), which means having prolonged intervals of being relatively symptom-free, although some symptoms never go away. These periods of calm are interjected by relapses, or an attack of new or old symptoms.

Eventually, most people are able to identify triggers, but the unpredictability feels like being strapped into a roller coaster against your will.

There’s evidence that stress is a major contributor to inflammation overall. Although hiding MS can prevent stigma, it also requires herculean effort to conceal. This is hugely stressful, and although more research is needed, it may even contribute to disease progression, research suggests.

In addition, the restrictions placed on those of us with MS can lead to isolation. Coupled with the chronic course of the condition, MS can weigh heavily on us mentally. Disruption to our lives is inevitable.

Add in the fear of stigma, and many of us end up with anxiety or depression.

In Ireland, where I live, 1 in 3 people with MS have been diagnosed or treated for depression.

Although there have been great strides in destigmatizing mental health concerns as of late, depression stigma still exists. Having depression can add to medical costs and affect quality of life.

Workplace woes

Women are three times more likely than men to develop MS, primarily between the ages of 20 and 50. This has a disproportionate toll on our reproductive lives, relationships, and employment.

About two-thirds of women surveyed by the Working Mother Research Institute say they hide their symptoms at work, and 40 percent of people with MS in the recent MS Society survey kept their MS secret due to worries it would impact their career.

Gillian Moore was 33 when she lost the use of her left leg temporarily. Diagnosed with RRMS, she told only her parents and husband. It wasn’t until 6 months later that she began to tell friends.

“I had just had a baby so I wanted everything to be about her. Most people were fine when I told them, but I had one friend ask me how I could have ever done a marathon, which was a bit mean. Another responded with, ‘Oh, that’s awful.’ It doesn’t make you feel good when you want to hear positive support,” she says.

Gillian is a teacher in Germany, but says she won’t ever tell her employer.

“I don’t want to be categorized as being sick,” she says. “People ask what can’t you do rather than what you can do.”

Jennifer Smith is a teacher in London. She was diagnosed at 22 and has been on medication for 12 years.

“I didn’t tell anyone but close friends and family for 6 months, as I was in complete denial,” she says. “I still don’t tell my pupils. Part of me doesn’t want their sympathy, questions over my competence, or their fears that I might leave them during exams.”

While disease-modifying therapies (DMTs) are proven to reduce relapses, people who conceal MS may be more likely to skip medical appointments and delay starting DMTs, which can lead to increased progression.

Some injectable medications are hard to mask because they leave visible bruising. Some infusion treatments require regular hospital appointments, which can also interfere with work.

Jillian Jones is on a DMT, but initially hid her MS when she got a new job because she didn’t want her capabilities questioned. When she needed to take time off to go on IV steroids, she got nervous and told her manager.

“She seemed annoyed, so I worry it may become an issue. I now know my capabilities aren’t the problem, rather the days I can’t work because of treatment,” she says.

Long-term employment is associated with a higher quality of life and better disease outcome. Yet too many people are forced to give up their jobs because of a lack of provisions or an employer’s willingness to adapt.

This lack of flexibility means people with MS have higher levels of unemployment, reduced work participation, and are paid less than people with other chronic conditions, notes a 2018 review.

In Ireland, workforce participation with MS is the lowest, at 43 percent, compared with 60 percent across other European countries.

Overcoming stigma

Mary Kenny was diagnosed 10 years ago when she was 32, but she still struggles with accepting her diagnosis.

“I didn’t want to be the news around town. I have problems with self-esteem, and I felt sad that my news wasn’t that I was getting married, having babies, or any of the other stuff people my age were doing. My news was that I had MS.

“Even though I’d like to be more open about my condition, I find it very hard to say, so I think I’m definitely in a lot of denial still. Maybe if I was more open about it with others, I’d be more honest with myself too?” she says.

We can tackle stigma not only by reframing how we ourselves view MS, but also by challenging misconceptions. Counseling and increased work flexibility can also help erode discrimination. Misplaced kindness or ignorance over disability and chronic conditions also highlights the need for a more balanced portrayal in the media.

People living with MS shouldn’t need to hide their diagnoses any longer.

Article originally appeared on June 29, 2021 on Bezzy’s sister site, Healthline. Last fact checked June 29, 2021.