How speaking up can help
It's not always easy to talk to your friends and family about multiple sclerosis (MS), but speaking up has its benefits, including the following:
It can help friends and family understand what's been going on. If your MS symptoms have been affecting your social or family life, those around you may be wondering what's up. They may even think they've done something to cause the changes. By telling them that you have MS, and explaining how the condition affects you, you're helping them understand what has been happening.
It can help you share the load. Sharing your condition with friends and family will also make it easier for you to ask for practical and emotional support to lighten your load. For example, you could ask your spouse or kids to pitch in with household chores. You may also want to talk to a sympathetic friend.
It can help get your family involved in making decisions. MS is something you'll need to face as a family, and the first step is telling your family members about your condition so you can make plans and decisions together. For information on how to tell your kids, see "Talking to your child about MS."
It can help your relationships with friends and family evolve. While you're still the same person you were before your diagnosis, you'll have new challenges to face, and telling friends and family can help you face them together. Your relationships will grow and develop as you move forward.
It can relieve the stress of hiding your condition. People with MS sometimes keep their condition from their friends or family for many reasons: they may be waiting for the right time, they may want to protect them from worrying, or they just don't feel ready. While telling can be stressful, so can concealing your condition. Telling your friends and family will help relieve this strain.
For more information to help you talk to your family and friends, see "Deciding who and when to tell about your MS" and "What do I say, and how do I say it?"
Deciding who and when to tell about your MS
When it comes to deciding which friends and family to tell about your MS and when to tell them, there are no hard and fast rules. Let your instincts and feelings guide you. In general, there are a few things you should consider when you are deciding whether and when to tell a friend or family member about your MS:
- your reasons for wanting to tell them
- the possible advantages and disadvantages of telling them
- whether this is the best time to tell them
- whether they will be able to respect your wishes for confidentiality
- what their reactions are likely to be and how you will handle them
Deciding when to tell your children can be difficult. This is an individual decision, but it's important to know that even very young children can be told in an age-appropriate way, and the truth may even be less frightening than what they have been imagining. For more information, see "Talking to your child about MS."
Choosing the right time to tell a dating partner about MS can also be a challenge. Judge the timing carefully, based on how your relationship is progressing. You don't need to tell everyone you date, but if a relationship is getting serious, don't leave it so late that it could threaten your developing trust.
When you have MS, there are some people that you must tell, such as your health or disability insurance plan. You should also let health care providers involved in your care know that you have MS.
Legally, you are not required to tell your employer you have MS unless you need medical leave or time off because of your MS, or you need workplace accommodations (changes to your working conditions or responsibilities that allow you to continue doing your job). To learn more about deciding to disclose your condition to your employer or colleagues, see the "MS and Employment" health feature article.
What should I say, and how do I say it?
There's no "right" way to tell people you have MS. What you say, and how you say it, will depend on your own individual situation, as well as the person you are speaking to. However, there are a few things to keep in mind.
Provide your family and friends with some information about MS. There are many myths and misconceptions about MS, so it's important to give your friends and family credible, reliable information. They'll want to know things such as:
- What is MS?
- What causes MS?
- How do people get MS?
- What are the symptoms of MS?
- How does MS affect your daily life now and how could it affect you in the future?
If you're not sure about the answers to these questions, see the MS Channel or ask for materials from your local MS society. You can also refer friends and family to these sources if they want to learn more.
Tailor your information to your audience. The information you choose to give will depend on the person's age and how well you know them. For more information on talking to children, see "Talking to your child about MS."
Be prepared for personal questions. Your friends and family may want to know how your MS could affect your relationship with them and whether there's anything they can do to help. This is a great opportunity to reassure them that you value your relationship, and to ask for support. People can do all kinds of things to help, such as sharing chores, driving you to the store, or just being there when you need someone to talk to.
Your friends and family may react in a variety of ways. There's no way to predict how a friend or family member might react when they learn you have MS. They may experience a range of emotions, as you may have when you were first diagnosed. You may need to give them some time to absorb the information.
Practice helps. It's not easy to tell someone you have MS, but practicing can help. Write down what you want to say first, then try role-playing with someone who makes you feel comfortable (a trusted friend, your spouse, or someone from an MS support group).
Talking to your child about MS
Why tell my child?
Choosing when and how to tell your child about your MS is a personal decision. Although parents may avoid telling their child because they want to protect them, there are important reasons to consider telling them:
- Children are very perceptive. Even if you try to hide your condition, your child will realize that something is wrong. Often, what your child imagines is far worse than the actual truth. Telling your child about your condition in an age-appropriate way can help ease your child's anxiety.
- Telling your child can relieve stress for you and help your family fight MS as a team.
- Telling your child can help build trust.
When should I tell my child?
Every child is different, so you'll need to use your own judgment. Generally, it's a good idea to tell your child soon after you are diagnosed. This decreases the chance that your child will worry about what is going on. Take your cue from your child and the events in your life: if your child seems concerned or preoccupied, if they ask questions, or if they notice your symptoms, this could be a good time to tell them.
What should I say?
Don't worry about finding the perfect words - there's no "right" way to tell your child. Think about what you want to say ahead of time. You may wish to consult your local MS society or visit the MS channel to learn more about the condition. Keep the following in mind:
Give your child some reassurance. Children often wonder if their parent with MS will die prematurely, or if MS is contagious. You can reassure your child that these things are not true. Let your child know that even though your symptoms may affect your ability to do certain things, you will always be there for them as a parent.
Tailor your information to your child's age and maturity level. Very young children (under 3) don't understand the concept of MS, but they pick up on your mood and are mostly worried about separation from their parents. Children 3-6 years of age may worry that your MS is a punishment for something they did wrong. Reassure them it's not their fault. Older children (ages 6-12) understand the concept of MS as an illness and may want to know what they can do to help. Adolescents and teens may be concerned about balancing their own life as an independent person with the responsibilities of helping out at home. Get them involved in deciding how they can help the family, and encourage them to have their own life as well.
Be prepared for different reactions. Your child may react to the news with a variety of emotions. She may have many questions. If so, do your best to answer them. If there's something you don't know, say so, and then find the answer. You may want to consult the MS channel or your local MS society for questions you're not sure of. If your child is not asking any questions, ask him what he thinks or how the news makes him feel.
You may also want to give your child some age-appropriate reading material and videos on MS - check with your local MS society.
Are you making the most of your MS therapy? Evaluate your current MS treatment and get some guidance to have a discussion with your neurologist.
Do you know all your treatment options? Learn about the MS disease-modifying therapies.
Tracking your MS symptoms helps you and your doctor tell how your treatment is working and how your MS is changing.