Multiple Sclerosis Diagnosis: Telling Family & Friends

Multiple sclerosis (MS) is a progressive autoimmune condition that affects the central nervous system (CNS), which includes the brain and spinal cord. MS progression is unpredictable and different for everyone, but common symptoms include fatigue, pain, cognitive changes, speech difficulties, and mood changes.

If and when to tell people about your diagnosis is entirely up to you, but there are benefits to talking about it. Read on to learn how to talk to family and friends about your MS.

Older man with MS in wheelchair hugging grandchild

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Pros and Cons of Telling People About MS

Whom you tell about having MS is a personal decision, and no one should be pressured to disclose their diagnosis before they are ready. It can help to weigh the pros and cons of telling people about MS.

Pros

Talking to others can help you create a support network for yourself and your family. Telling those you are close to gives you an outlet for your emotions, and an opportunity to ask for help when you need it.

Some people with MS find it is easier—and even a relief—to tell those they are close to about their diagnosis rather than trying to conceal it.

Telling people in your life you aren't close to can have advantages as well. For example, informing school staff can open another source of support and let them know to watch for signs your child may be struggling.

Cons

People with MS, as with other conditions, can face stigma and discrimination. This can impact areas such as dating, friendships, and other relationships.

Disclosing to employers or potential employers may impact how you are treated in the workplace. For some people, letting their employer and colleagues know about their diagnosis is a positive experience and helps them gain additional, needed support. But there is also the potential for unconscious bias from the people you work with, leading to negative experiences.

Before telling people in the workplace about your MS, learn about your rights, which differ by country.

When Is the Right Time?

Determining the right time depends on whom you are telling and when you feel comfortable doing so.

Those with partners will likely want to inform them soon after diagnosis because it will impact their lives as well.

You may want to tell friends, family, and children right away, or you may want some time to adjust to your diagnosis and prepare before telling others.

Consider how willing you are for the information to circulate. It may be a good idea to tell all of your children at the same time so they don't inform the others before you do. When choosing to tell friends and family, keep in mind who is likely to tell others and how you would feel about it.

Telling Family

When telling your partner, think of it as the beginning of an ongoing discussion rather than an announcement. Give your partner time to adjust and understand they will need comfort and support from you in addition to giving it to you.

Telling parents can be difficult. Parents worry about their children, no matter how old they are. Some parents may have feelings of guilt thinking they "gave" you the condition, since there is a genetic element to the development of MS.

As with your partner, give your children time and space to adjust, and be open to answering questions they may have. Giving them materials with information about MS to read when they are ready may help as well.

Telling Your Children

Encouraging discussion is the main focus when talking about MS with your children. Answering their questions keeps lines of communication open and allows them to keep asking questions and sharing their feelings and fears.

Keeping information from your children in an effort to protect them may discourage them from opening up. Instead, give information about MS in ways that they can manage and be truthful with them.

Children, especially older children and adolescents, may find it helpful to talk to your healthcare provider directly. They may also want to talk to the healthcare provider without you present so they can ask questions without worrying about your response or your feelings.

Children can react in ways that look different than the expected emotional response. Some children may become quiet, internalizing how they feel. Others may act out with tantrums. They may experience anxiety or depression. Their feelings may even come out at night through sleep disturbances, nightmares, or bed-wetting. If these symptoms are continuing past the initial adjustment period, speak with your healthcare provider.

When they come to you with questions or want to talk, give them your full attention. It may help all of you to spend some extra time together to offer them comfort and reassurance.

Telling Friends

Your friends can be a great resource for both emotional and practical support and can offer you an outlet outside of your family. You may prefer to tell your closest and most-trusted friends first, and then decide who else you feel you would like to share with.

Each friend you tell may react differently. MS will change your friendships, but that doesn't necessarily mean you will be any less close. Be open and honest with your friends and encourage them to do the same with you.

Sharing Info Through Social Media

Whether to discuss your diagnosis via social media is a matter of personal comfort. Before posting on social media, either on your own profile or in a group, check privacy settings to make sure only the people you want to see your posts will see them.

What Should You Say?

It's best to tailor what you say to the person you are talking to. Planning out what you want to say ahead of time or even practicing first may help.

When telling family or friends, what you say specifically is less important than keeping communication open. You might choose to give information about MS generally, talk about your own feelings and experiences, or both. Go with what feels comfortable to you and encourage your loved ones to ask questions as they arise.

You should also set boundaries, such as who is allowed to know this information and subjects that you don't wish to discuss.

Some tips for talking to your children include:

  • Pick a time when you don't have time restrictions and when your children aren't tired or distracted.
  • Choose a setting that allows a face-to-face conversation and make regular eye contact.
  • Start with the basics (you don't have to get through everything in one sitting).
  • Be honest with them.
  • Use medical terms but explain them in a language they can understand.
  • Encourage questions and treat them respectfully, even if they seem off-topic.
  • If you don't know an answer, say so, and, if possible, tell them you will find out the information (and follow through with it).
  • Make sure your children know they can always come to you to ask questions or talk about how they're feeling.

Expect children and adolescents to be concerned about how your diagnosis will affect their lives. This is normal and not an indication they don't care or don't understand. Explain changes that may happen, reassure them, and help them feel secure

What to Expect

Everyone will react to your diagnosis in their own way, some of which may be different from your own or the way you expected them to respond. That is normal.

Some people may be very calm, while others may panic. They may have a lot of questions, they may be quiet and not know what to say, or they may blurt out things before thinking. Some people may avoid you, while others may be over-eager to help.

None of these reactions is a reflection on you or their feelings about you. They care and want to support you, they just might not know how to express it in the moment. Be honest with them about how you feel and what you need from them.

Resources for Your Friends and Family

MS organizations are a great place to look for resources for both you and your loved ones. They offer information about MS and also provide support tools.

The Multiple Sclerosis Society has a YouTube series that explains MS to children using puppets, and an informational activity book for children to help them work through their feelings. There are also picture books about MS you can read with them.

Summary

Whom you tell about your MS diagnosis and when is entirely up to you. While there are some risks involved in disclosing that you have MS, telling your family and friends can help you create a support network. Being open and honest with your children about your condition and encouraging them to ask questions and talk about their feelings can help them understand and cope better.

A Word From Verywell 

The only person who should decide who gets to know about your MS is you. If you choose to tell people about your diagnosis, think about whom you will tell and what you are going to say beforehand, and then keep communication lines open. Remember you don't need to have all the answers, and it's OK to set boundaries.

Frequently Asked Questions

  • Should you tell your children about your MS diagnosis?

    It's your decision whether or not to tell your children, but being open and honest with them about your diagnosis helps encourage them to ask questions and share their feelings with you.

  • What do you say to someone who has been diagnosed with MS?

    Let them know that you support them. Ask how you can help and be specific. Remember that they are still the same person they were before their diagnosis, and chat about everything you have always talked about.

  • What are some good ways to share a diagnosis?

    A face-to-face discussion is a good way to share sensitive information, especially when talking to children. Some people may feel more comfortable sharing by phone or online. Regardless of the method, it's most important to be open and honest with each other.

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9 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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