Men with Sjögren’s disease

Men with Sjögren’s disease: the unseen and often unheard

Sjögren’s disease is most often spoken about as a condition that affects women. Around 90 percent of people diagnosed are female.

But that narrative has created a blind spot.

Men are living with Sjögren’s disease too. At least 1 in 10 diagnosed patients are male, and many clinicians and patient groups believe the true number is higher. Underdiagnosis, delayed recognition, and social factors all play a role.

For men, Sjögren’s disease is not just under-recognised. It is often under-discussed.

And that silence can shape the entire experience of the disease.

Living with symptoms that are hard to explain

Sjögren’s disease is complex and systemic. It can affect far more than the eyes and mouth.

People may experience:

• persistent, overwhelming fatigue
• joint and muscle pain
• cognitive difficulties
• nerve involvement
• dryness that affects daily function
• increased risk of serious complications, including lymphoma

These symptoms are often invisible. They fluctuate. They can be difficult to measure or explain.

For many people, that creates frustration.

For some men, it creates something else.

Reluctance.

There can be a tendency to downplay symptoms, to keep going, or to avoid talking about how much the disease is actually impacting daily life. Not because the impact is small, but because speaking about it does not come easily.

The weight of silence

Many men are not taught to talk openly about their health, especially when it comes to chronic illness.

There can be pressure to appear capable, to manage independently, and to avoid showing vulnerability. When symptoms are invisible, it becomes even easier to stay silent.

But silence has consequences.

It can mean:

• delaying a visit to a doctor
• minimising symptoms during appointments
• not pushing for further investigation
• managing alone instead of seeking support

Over time, this can contribute to longer diagnostic journeys and greater physical and emotional strain.

Sjögren’s disease already has an average diagnostic delay measured in years. For men, that delay can be even longer.

When you do not see yourself in the conversation

Representation matters in healthcare.

It shapes awareness. It influences diagnosis. It affects how comfortable people feel seeking help.

When Sjögren’s disease is consistently framed as a women’s condition, men may not recognise their own symptoms in what they are seeing or reading.

They may not think to ask the question.

And even after diagnosis, there can be another challenge.

Connection.

The challenge of finding support

Support networks are a critical part of living with any chronic illness. They provide understanding, shared experience, and a sense of not being alone.

But for men with Sjögren’s, connecting is not always straightforward.

In a patient community where most people are women, men can feel like outsiders. Even in welcoming and supportive environments, it can be difficult to relate, to open up, or to feel fully understood.

Some men describe:

• feeling like they do not quite fit in support spaces
• hesitating to share their experiences
• struggling to talk about symptoms, especially fatigue and pain
• not seeing other men reflected in awareness campaigns or patient stories
• 

This can lead to a quieter kind of isolation. One where support exists, but still feels just out of reach.

 Differences that are still being understood

Research into Sjögren’s disease continues to evolve, and there is still much to learn about how it presents across different populations.

Some studies suggest that men may experience more severe systemic involvement and may be at higher risk of complications such as lymphoma.

At the same time, men remain underrepresented in research.

This creates a gap in understanding, which can impact everything from diagnosis to treatment approaches.

It reinforces the need to ensure that all patient experiences are recognised and included.

Why this matters now

Awareness shapes outcomes.

When a group is under-recognised, the effects are real:

• symptoms are overlooked
• diagnoses are delayed
• support needs are unmet
• experiences go unheard

For men with Sjögren’s, this is not just about statistics. It is about visibility, understanding, and access to support.

It is about creating space for conversations that may not come easily, but are essential.

Building support that reaches everyone

Support needs to be accessible, inclusive, and flexible.

For some men, traditional support groups may not feel like the right fit. Different approaches can make a meaningful difference.

This could include:

• smaller or more informal group settings
• online forums where anonymity feels safer
• one on one peer connections
• increased visibility of male patient voices
• targeted conversations around men’s experiences with chronic illness

There is no single way to seek support. What matters is that the option exists, and that it feels approachable.

Changing the conversation

Sjögren’s disease does not belong to one gender.

Expanding the conversation to include men is not about taking focus away from the majority. It is about making sure no one is left out.

It is about recognising that:

• men are living with this disease
• their experiences may look different
• their barriers to diagnosis and support can be unique
• their voices deserve to be heard

The more visible these experiences become, the easier it is for others to recognise themselves, seek help, and feel less alone.



No one should have to do this alone

Living with Sjögren’s disease can be challenging in ways that are both visible and invisible.

For men, those challenges are often compounded by silence and isolation.

Changing that starts with awareness. It continues with conversation. And it grows through connection.

Because support should not depend on who you are.

And no one should feel like they have to navigate Sjögren’s disease on their own.