Talking about MS: Here's what to share and what to keep private in real-life conversations

Should you tell others about your multiple sclerosis?

The answer to the question “Should I tell people?” is more complex than a simple yes or no that applies in all situations. It depends on the context, the circumstances, and the person you’re speaking to.

One thing is certain: you are under no obligation to disclose your condition. This is a personal decision that belongs entirely to you. Your health is private, and you are the only one who can decide how you want to handle it.

In your life, there are probably people:

• whom you feel emotionally close to and may want to confide in,
• with whom it might be useful or necessary to talk about your condition,
• with whom you feel it is neither necessary nor appropriate, and with whom you do not wish to discuss your illness.

If you decide that talking about it feels important or helpful, you are also free to choose what you share.

You may decide to:

• stick to the bare minimum (“I have multiple sclerosis…”) and explain only what it means in situations that directly affect you and the other person, or
• go into more detail with people you feel closer to or who you sense will respond with kindness and understanding.

Each time you face the dilemma “Should I talk about it… or not?”, the decision can be made based on the situation and the person in front of you.

Arguments for and against telling others about MS

Reasons to choose to talk about your MS

Talking about your condition is not just about naming the diagnosis. It’s also about helping others understand what you’re living with.

It gives you the opportunity to explain symptoms that are not always visible and to clarify:

• how they affect you and your daily life,
• that the way you act or react is often an adaptation to how MS impacts your everyday functioning.

Talking about your condition can help you receive understanding and support, feel better understood, and leave less room for worry or assumptions.

It can also help you feel less alone, open the door to dialogue, and reduce awkwardness, misunderstandings, or unspoken tensions.

Reasons to prefer not talking about your MS

Some people choose not to talk about their condition in order to protect their loved ones and avoid worrying them.

Others prefer not to talk about it to avoid uncomfortable questions, disappointment over certain reactions (insensitivity, sadness), or prejudice (such as misconceptions about contagion).

Not talking about MS can also be a way of protecting yourself, especially if you fear that how others see you might change after the announcement (for example, associating “MS” with a wheelchair, incontinence, or disability). For some, it’s a way of avoiding being perceived as vulnerable or “sick,” and of continuing to be seen as a “normal” person in the eyes of others.

What should you say about multiple sclerosis?

Try to explain the condition in a simple, clear way, focusing on the symptoms that affect you personally.

You may also choose to explain:

• how the condition entered your life, in chronological order, to help others understand your journey,
• how the condition is managed, which can be reassuring for those around you to know that you are being treated and followed medically,
• how MS affects your daily life, the constant adjustments you have to make, and how you cope with them.

It’s also helpful to address common concerns directly, such as:

“It’s a condition that will always be there: there’s no cure, but it’s not fatal.”

“It’s not contagious.”

There’s no need to talk about possible future consequences, as they are unpredictable.

If you wish to encourage dialogue, you can also let people know they are allowed to ask questions, while keeping in mind that you always have the right to say no:

“I don’t feel comfortable talking about that, but I don’t mind that you asked.”

When and how to talk about MS: preparing and practising

There is no “perfect” moment to talk about your condition, but personal topics are often easier to discuss in small groups or one-to-one settings.

Preparing what you want to say is important. Knowing your key messages in advance helps you avoid improvising based on the audience. You won’t talk in the same way or share the same details with a partner, close family, friends, or work colleagues.

It’s also worth remembering that “talking about your condition” rarely happens just once. People you inform will often want to check in on you later and may continue to ask questions.

Being prepared and ready to speak at any time allows you to choose moments that feel right and to gradually repeat the process, making it feel more natural and comfortable over time.

Conclusion

Deciding whether or not to talk about your multiple sclerosis is a deeply personal choice. There is no “right” or “wrong” decision. Everything depends on your situation, the people around you, and how you feel.

What matters most is staying true to yourself, preparing your message if you choose to share your diagnosis, and giving yourself the time you need to manage reactions and maintain dialogue with those close to you.

Alain Lagreze, who lives with multiple sclerosis, also leads Therapeutic Patient Education (TPE) workshops on this topic. Drawing on his own journey, he supports patients in their reflection and communication, helping them make informed and calm decisions for both their personal and professional lives.

Talking about MS is, above all, about creating space for understanding, support, and kindness around you, while respecting your own pace and needs.

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Take care!