How can I tell people?

When you've just been diagnosed with multiple sclerosis (MS), you'll need to think about who to tell, when to tell them and how much to tell them about your diagnosis.

When you have been diagnosed with MS, you're the one experiencing the symptoms but your diagnosis will affect those around you to a greater or lesser extent. As well as being a person with MS, you may be a partner, parent, brother or sister, friend and work colleague, amongst other roles. The people around you will be able to support you, if they have information, but it's up to you how and when you tell them.

Learning about MS

Making Sense of MS: We ask people how they learnt more about MS once they had been diagnosed. 

Why should I tell people?

Perhaps you usually talk about what's going on in your life with family and friends. Will they be worrying about what's happened if you've gone very quiet or are avoiding doing certain things, for example if you get more tired than before?

People may try to guess what's happened. They may guess correctly or they may come up with an explanation that's wide of the mark. Would it be better if they know what's really going on? Giving people another explanation may seem easier to begin with but the strain of keeping up the pretence can be enormous.

You may feel more supported if others are on board. This could be emotional or practical support. It could just be a sense of people being there for you if you need them.

You may feel that some people need to know. Is your manager at work wondering why you've had time off? Are your family wondering why you've got no energy to play with the kids?

Talking to people can be a relief. Discussing your situation and any concerns can bring them into the open and put them into perspective. 

Taking the lead

Telling people is something where you can feel in control. Sometimes, you might like others to lend a hand. For example, would it be easier for you if your partner told their own family? This is something that you could discuss and plan with your partner.

However, you may like to set some ground rules for each person, such as whether or not you would like to be the one to break the news to your wider circle or whether it's OK for them to pass the news on.

What should I say?

You may feel nervous about telling people. Perhaps you think they'll treat you differently, in which case, you might like to emphasise that you are still the same person. What to say is a very personal decision and you could tailor it to fit the person you are telling.

You may want to say something about MS generally but also describe what MS is like for you. You may prefer to keep it brief to begin with. You can fill in more detail as you learn more yourself or become more comfortable talking about your MS. Your MS nurse may be able to help by explaining the condition to close family. 

You might like to have some printed information about MS which you can give to people. It's probably best not to overwhelm others with too much information. You can always refer them to our website for when they're ready to know more.

It's about listening too

Telling people is only part of the task. It can be good to listen and reflect. What happened when you told them? They may have been surprised, shocked, uncomfortable, fearful, tearful or angry. They may need time to learn about MS and come to terms with it too. They will have their own questions about what it means for all of you.

Don't be surprised if their reaction to your diagnosis, or their way of dealing with it, is completely different from your own or from how you thought they might react. Often people don't know what to say so they may go quiet or say the wrong thing. Remember that they do care about you so try not to take anything inappropriate too much to heart.

Can you understand or accept their initial reaction? Can you give them some space to get used to your diagnosis and give them permission to talk to you again when they feel more ready?

Keeping the conversation going

Are you comfortable talking about what MS might mean for all of you? You may still be getting used to your diagnosis but someone else would like to steam ahead and learn more about MS, make changes or discuss sensitive topics before you are ready. It might be the other way round – you want to talk things through but others seem reluctant. If so, it's more likely that they feel uncomfortable rather than they don't care.

You may be the sort of person who prefers to deal with things by carrying on as normal and not talking about your MS. In this case, you should make it clear that you'd prefer not to talk about your situation, at least at the moment.

Some people may instinctively want to protect you, mollycoddle you or take over everything. This may be what you'd like sometimes, or all the time, but equally it may be very unwelcome. Again, it's best to be clear with them what you prefer.

In the long run, it's good to keep the channels of communication open as far as possible. Even if you, or your loved ones, are not ready to have an in-depth conversation now, it's important that everyone feels that they will be able to raise the topic at some point in the future.

Living in the real world

In an ideal world, everyone would react well and support you in exactly the way that you need. We can give you information and support to help this happen. For those closest to you, this news can be a shock and they may also need time and assistance to come to terms with your diagnosis.

Telling people may be a great relief for you as others will now understand why you've been anxious, tired, a bit wobbly on your feet, going to the hospital or whatever other impact MS may be having. There's no correct way for others to react to the news of your diagnosis so you will probably experience a whole range of possibilities.

The people you have to tell

There are just a few people and organisations that you must tell about your diagnosis straight away.

If you drive, you must tell the DVLA (Driver and Vehicle Licensing Agency) who issue driving licences as MS is a 'notifiable' condition. They will send you a form to fill out and may contact your doctor or ask for an assessment. You may be able to keep a full licence or you may be given either a one, two or three year licence then reassessed.

You should also inform companies that have issued your insurance including any health, life, travel and motor insurance policies. Take a look at the small print to see if you need to tell them straight away or only when you renew the policy. If in doubt, give them a call as not informing them could make the policy invalid. Also, you may be able to make a claim under some health or critical illness policies as soon as you are diagnosed.

Lastly, in some jobs including the armed forces, you will need to tell your employer straight away. Check your contract but, for example, if you drive a passenger or heavy goods vehicle or if your job requires a certain level of fitness or eyesight, it will almost certainly be a requirement.

Telling family and friends

Making Sense of MS: In this short film we ask people how their family and friends reacted to their MS diagnosis.

Talking with family and friends

News of your diagnosis may come as a surprise to your family and friends and they may need time to learn about MS and come to terms with it too. They will have their own questions about what it means for all of you. Don't be surprised if their reaction to your diagnosis, or their way of dealing with it, is very different from your own or from how you thought they might react. Often people don't know what to say so they may go quiet or say the wrong thing. 

You don't have to tell people in any particular order. You might like to begin with whoever you feel closest to or you might choose whoever you think will be most understanding. 

Some people may seem over concerned, protective or interfering. Most likely, they have your best interests at heart. This can be particularly difficult if you're a young person with MS, perhaps living with your parents, and you'd like to make your own decisions. If you are over 18, you are legally entitled to do this. Your family, however well-meaning, cannot make decisions for you and have no automatic right to attend appointments with you or see your medical records.

Your family will naturally want to look after you but this should be done in a way that's acceptable to you. You may need to explain how you feel about your MS and where you stand on these issues. It is good to have support but also to feel in control of your life with MS.

Telling children

Telling children may seem really daunting but they are often more accepting than expected. Very young children will not understand even the simplest explanation so you will need to wait until they are a bit older. Many children will be glad of an explanation as, just like adults, they may have been wondering what's going on. Children may have been imagining a worse scenario, so don't wait too long before putting their concerns to rest. 

Every family is different and you will know how, and when, your family usually shares news. You might like to choose a time when everyone is relaxed but not distracted by things like the TV so you know they will be listening. You might like to tell everyone together as children are rarely good at keeping secret from each other, even for a short time. 

You can choose words which are easy for them to understand and you don't have to give a huge amount of detail. You might like to begin by talking about the things the children already know, or may have noticed, and then giving the explanation. For example, they may know that you have been getting really tired or can't walk very far at the moment. Now you can say why.

It is good to let them ask questions although you should be prepared to say "I don't know" or "the doctors don't know".

We have more suggestions about how you can talk with your kids and we also have books that you can give to your children which may be helpful.

Work and education

In some jobs, you have to tell your employer straight away so it's worth checking your contract. In most jobs, you don't have to disclose your diagnosis and, if MS is having no impact on your work, you may choose to wait. However, just like others, your colleagues may be wondering what's happening or they could be misunderstanding your symptoms. For example, balance problems could be attributed to a drink problem or fatigue might be put down to laziness. Hopefully this is not the case, but you might welcome the opportunity to explain what's really happening.

You may prefer to tell only your manager and close colleagues especially if you will need time off for appointments. If your symptoms are causing you any difficulties and you would benefit from changes to your working pattern or environment, you'll need to disclose your diagnosis. As soon as you are diagnosed, you're protected by the Equality Act. This requires employers to make reasonable adjustments so that you are not at a disadvantage because of any difficulty or disability that MS causes. Examples of reasonable adjustments may include returning to work after a relapse by gradually increasing your hours or, if heat makes your symptoms worse, allowing you to sit in a cooler part of the office. Also if MS affects your sight, they may provide online reading software to convert text to speech.

If you are in higher education or at school or college, you will also need to think about who you might want to tell. Most higher education centres have disability coordinators who can offer advice. Similar support should be available in schools and colleges. This could include providing a teaching assistant to help you or giving you extra time during exams. 

Working and studying with MS can be challenging but there is support available to help you remain in employment or education.

New people in your life

As you begin to live with MS, there will be new people coming into your life. These could include new work colleagues, friends or a new partner. For each, you will need to decide whether to tell them about your MS, when to tell them and what's the best way.

You will become more practiced at talking about MS but, on the other hand, these people may not know you very well yet. It may be important to explain your MS in the context of who you are as a person and that it's only one thing about you.

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