How to Talk to Strangers About Your Multiple Sclerosis

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Multiple sclerosis (MS) is a progressive autoimmune condition that affects the central nervous system. If you've been diagnosed with MS, who you tell is a personal choice. Informing your loved ones, such as your partner or children, is typically necessary soon after diagnosis. Still, you may also wonder how and if you should discuss your diagnosis with casual acquaintances and strangers.

Read on to learn the pros and cons of talking to strangers about your MS and how to approach it if you choose to.

An older man in a wheelchair cooking with a child

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Pros and Cons of Talking About MS

Your health is your business, and you should never be pressured into telling people you have MS before you are ready.

Some people want to speak freely about their diagnosis right away, while others prefer to keep it to themselves or between them and their close circle. They may want to hold off on telling people until they have had time to become comfortable with their condition.

It can help to weigh the pros and cons of telling strangers and acquaintances about your MS.

Pros

One of the biggest benefits of telling people about your MS diagnosis is that it opens the door for support if you need it, now or in the future. When people are aware of your MS and how it affects you, they are better prepared to accept adjustments or provide accommodations.

Deciding when to bring up MS in a new or potential relationship can be difficult. Some people with MS choose to tell potential partners early on as a way to "filter out" people who would not be supportive and understanding of their condition.

Talking about it early on also eases the anxiety that may occur while wondering how the new partner may react. Some people find the strain of concealing their condition more difficult than talking about it.

Telling a potential partner on the first date isn't always necessary, but waiting too long to tell a new partner may cause trust issues in the relationship.

Cons

Unfortunately, biases towards people with disabilities like MS exist. These biases are often unconscious, but they can still be harmful, even if the person has good intentions. Some people with MS are concerned that once others know about their condition, it will change the way people think about and treat them.

While not always the case, sharing an MS diagnosis with colleagues can impact things like job security. Before discussing your condition with your employer or colleagues, learn about your rights, which vary by location.

It can also be tiring to repeatedly explain MS to people and educate them about the condition, especially if you are still learning about it yourself. Some people only discuss their condition with those they are emotionally close to until they are more comfortable talking about it.

In terms of new or potential relationships, some people find getting to know their potential partner better before sharing their diagnosis.

Are You Required to Tell Anyone?

Depending on where you live, there may be some people or places you are required to inform of your MS diagnosis. This may include:

  • The place that issues and controls driver's licenses
  • Some insurance agencies, such as those that provide your health and vehicle policies
  • Your employer, if it has responsibilities you may not be able to perform safely

Check the laws in your area and read the conditions of your insurance and your employee handbook. Whether required or not, check with your healthcare provider about what you can and cannot do safely, such as driving. This will vary from one person to another.

What to Say

There is no right or wrong way to talk about your MS. What you say will likely depend on who you are talking to.

Things to consider before telling someone about your MS include:

  • Who are you talking to?
  • Why do you want them to know?
  • How much do you want to share with them?
  • What do you want them to understand?
  • What is the best way to convey the information?
  • How do you predict they will respond?
  • What do you want this person to do once the conversation is over?

You may also find it helps to:

  • Practice what you are going to say.
  • Role-play beforehand with a person you trust.
  • Write down what you want to get across.
  • Bring printed information on MS or links to MS organization websites to give the person to read on their own after your talk.

Dealing With Different Reactions

People react differently, and it can be difficult to predict how someone will respond when you tell them you have MS. They may:

  • Not know what to say and become quiet or say something inappropriate
  • React calmly
  • Be shocked, fearful, or upset
  • Be curious and ask questions (some of which you may find insensitive and not want to answer—and you don't have to)
  • Go out of their way to help or protect you (which you may or may not want—it's OK to say "no" and set boundaries)
  • Avoid you because they aren't sure what to do
  • React differently than you expected them to
  • Want you to comfort them
  • Need time to process before responding

Loved ones may have stronger emotional reactions than strangers.

Regardless of how the person reacts outwardly, their reaction usually comes from their own uncertainty. It can help to remember this when you get a reaction that is hard not to take personally.

Dealing with other people's reactions tends to be easier to manage once you are comfortable with the diagnosis yourself, especially since other people may take their cue from you. It's OK to take time to come to terms with having MS before telling other people who don't need to know right away.

Summary

Telling people about having MS is a personal decision. There are benefits and drawbacks to talking about an MS diagnosis. Some people choose to speak freely about their condition with loved ones and strangers, while others prefer to wait until they feel more comfortable talking about it to share it with people outside their close circle.

It can help to prepare ahead of time before telling people you have MS. People react in different ways, and it is difficult to anticipate how someone will respond. Remember that most people respond from a place of caring.

A Word From Verywell 

Being diagnosed with MS is a life-changing discovery. Who you tell about your MS and when is entirely up to you. Whether you share with more casual acquaintances or only those close to you is your choice, as long as you are comfortable with the decision.

Frequently Asked Questions

  • Should I tell people about my MS?

    Who and when you tell people about your MS is a personal decision that is yours to make. You may find that telling those close to you helps, especially in terms of getting support.

  • How do you explain MS to someone?

    It can be challenging to explain what having MS is like to those who don't have it and difficult for them to understand. Giving people printed material on MS or links to websites like MS organizations can be helpful. This way the person can learn this information in their own time and you can avoid having to explain it on your own, especially repeatedly.

  • When should I tell people about my MS?

    When to tell people about your MS is a personal decision. Sometimes it can come up in conversation naturally, or you may plan it ahead of time.

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8 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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