Telling people that you have MS can be difficult. Accepting the diagnosis yourself is hard, let alone sharing the news with others. Being able to talk about being diagnosed with MS can take courage, but it can be helpful too. If people understand MS, they are more likely to accept any adjustments or support you may need.
When you are considering talking to others about your MS, remember that everyone is different. Everyone you talk to has a different relationship with you, may want or need different information about MS, and may react in different ways to your news.
For each person, it is a good idea to consider if the person needs to know about your MS, and if so, what you want them to understand about MS and what is the best way to tell them. This way, you can tailor the way you talk to them about it. Some people find it good to practice what they want to say first.
Many MS organisations have printed information about MS which you can give to people to read and digest later.
Who to tell?
Partners or potential partners
If you are dating, or have recently met someone, you may not want to disclose your MS initially. Usually, it is not a good start to a relationship to keep secrets, but you also need to feel close enough to them to want to share important information. There is no one ideal time – you will know when you feel that the relationship is ready for this next stage. If the person is right for you, they are likely to be supportive. If they aren’t, then perhaps they weren’t ready or right for you anyway.
If you already have a partner, then your MS will change their life too. This can be worrying for both of you and you may need to support each other. Make sure you give your partner time to absorb the information, and remember to keep communicating about it over time.
Remember you cannot predict the future. All relationships have their ups and downs, and any number of things can bring them to an end or make them stronger. As with all issues that affect couples during their relationship, communication and understanding are really important.
Parents and other family members
Disclosing your MS to your family, who may have known something was wrong anyway, can help to begin the coping process. Grief and worry are normal emotions for family members to feel when someone they love has news about their health. Parents in particular worry about their children, even after they have grown up. Other common emotions can include guilt if parents feel that they have somehow ‘given’ their children the condition.
How to explain MS to your children can be worrying, but you are the best judge of how, when and what to tell your child about your MS. Children are naturally likely to have questions, feelings and worries about the impact of MS on you and your family, and it is a good idea to encourage them to share these with you. It may be important to explain, for example, that MS is not contagious.
It may be a good idea to start with your closest friends and with those that you feel most comfortable with. With time and practice, you’ll be able to decide how much you want to share and with which friends. A change in someone’s health can be a challenge to friendships, especially if symptoms such as fatigue affect a person’s ability to take part in social activities, and many people with MS say that telling them helped them to identify their true friends.
Employers and colleagues
Disclosure at work can have a significant impact on your job security, employment options and career path. Before disclosing your MS in the workplace, learn about your rights (these vary from country to country– your national MS society should be able to help) and think carefully through the pros and cons of sharing this personal information. Many people say they have supportive employers and colleagues, but this is not always the case. Read more in our Global MS Employment Report [PDF, 1MB].
How will they react?
Each person will react differently to what you tell them, so be prepared for a range of reactions. People may be shocked, fearful, calm, distressed or quiet. Some may not really understand and will need time to digest what you are telling them. Others may go out of their way to help and sometimes this can be frustrating if it is not wanted. Some people may avoid you because they don’t know what to say. They don’t know how to deal with you having MS, so they choose not to discuss it, which can be difficult.
Whatever a person’s reaction, talking about it with them can be really helpful. This may be easier once you have come to terms with the diagnosis yourself, so talk to people when you really feel ready.