What does it mean for family, friends or colleagues when someone you know has been diagnosed with multiple sclerosis?
This resource should answer some of your questions. It has been produced by the MS Trust, a national charity that supports people with MS and those around them.
This resource aims to support a wide range of people including the partner of someone recently diagnosed with MS, the wider family, friends and work colleagues. Not all of it will apply to you – it depends on the kind of relationship or interactions that you have with the person with MS.
What is MS?
MS stands for multiple sclerosis which is a condition that affects the brain and spinal cord (the central nervous system).
'Sclerosis' means scarring or hardening of tiny patches of tissue. 'Multiple' is added because this can happen at more than one place in the brain and spinal cord.
MS is a lifelong condition. It is not fatal and most people with MS live about as long as everyone else. It can't be passed on to other people like some viruses and bacteria. At the moment, there is no cure for MS but there is a wide range of treatments.
Over 100,000 people in the UK have MS which is about one in every 600. Every week, nearly 100 more people are diagnosed with MS.
What are the symptoms of MS?
There is a wide range of possible MS symptoms.
Most people experience a small number around the time of diagnosis and won't go on to experience them all. Some of the most common are fatigue (a kind of exhaustion which is out of all proportion to the task that has been undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking, or problems with eyesight.
Many of these symptoms are invisible to other people. This can be very upsetting to someone who is feeling very unwell but looks OK to others. They may feel that they are not believed when they say that their symptoms are causing them difficulties. It's often best to ask someone how they are, rather than assume they are OK.
Sometimes symptoms are misunderstood by other people. Slurred speech or walking unsteadily can be symptoms of MS, but are sometimes mistaken for drunkenness. Poor performance in the workplace could be due to MS-related fatigue rather than laziness. It's best to keep an open mind and chat things through so that you are clear whether their MS is the cause of the difficulty.
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Is everyone's MS the same?
No, MS affects everyone differently.
If you have previously known someone with MS, you may be tempted to think that you know what it is like. However, it's best to begin with a fresh point of view.
Different people with MS experience different symptoms. Some people will have few symptoms for many years, but others will be more severely affected. MS is very unpredictable from day to day and even from hour to hour. Also, it's not possible to say exactly how someone's MS will develop in the long-term.
Many people who are newly diagnosed experience relapses, which are periods of new or particularly bad symptoms. The symptoms experienced during a relapse usually improve and may go away completely, although this can take a few months.
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What is it like to be diagnosed with MS?
People react differently.
For some people, diagnosis with MS happens rapidly after symptoms began very suddenly. Others may have experienced symptoms on and off for years and have been trying to find the cause. By the time other health conditions have been ruled out, they may be largely expecting their diagnosis.
They may be surprised, worried, tearful, depressed or angry. Some people feel a lack of emotion or as if it is happening to someone else. Others may feel relieved that they have finally found the cause of their long-standing symptoms. Many people will feel very different emotions at different times and moods can change very rapidly. This is likely to feel uncomfortable for them and, perhaps, for you too. However, it is understandable as they will need time to learn about MS and what it might mean for them.
How might I feel about their diagnosis?
You will have your own response to the news of their diagnosis.
You may feel any of a whole range of emotions: surprise, anxiety, anger or fear for the future, amongst others. You may feel no emotion at all to begin with or it may seem like the whole thing is unreal.
You may find that the news triggers memories from your own life, which can strongly shape how you react. Your feelings will also depend on how close you are to the person with MS. You will need time to adjust and you may find that your feelings are very different at different times. There is no correct way to react and your emotional response to the news may be completely different from theirs.
It may have been a surprise to learn that your partner, family member, friend or colleague was diagnosed with MS. Try not to worry too much about what might, or might not, happen or assume that MS will have an effect on some particular aspect of your lives. This time and energy could be spent in a more positive way on something that is important to you right now.
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Is it OK to talk about their MS?
Some people will be happy to talk to you about their MS. Others will find it difficult, especially if it is not long since they were diagnosed. There may be a careful balance to strike between needing to discuss issues and respecting their need for privacy and to talk about things when they are ready.
As far as possible, you should let them take the lead, as they will know what aspects they are comfortable talking about, who with and when they feel able to do this. Also, it may not be appropriate to push for treatments that you've read about, especially if these are rather new or controversial. The person with MS will want to make sure that they are doing the best for themselves and to discuss treatment options with their health professionals.
Telling others about their diagnosis is a tricky topic and, ideally, you should talk this through and then respect the wishes of the person with MS. They may be happy for you to talk to others but it is more likely that they will want to be in control of who knows what and when.
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What is it like to live with MS?
We can give you a few examples of how MS can affect daily life.
But it will be important to remember that they may only apply sometimes to any particular person or they may not apply at all.
- Fatigue can be physical or mental exhaustion or both. Someone may have energy at the beginning of the day, but fatigue kicks in later on and they will need to rest quietly in a cool place, go home or ask for help. This can happen unexpectedly so they may not be able to say in advance that they will run out of energy.
- Problems with eyesight can't usually be corrected with glasses. Someone may have blurred or double vision or blind spots. It may be difficult to read labels in the supermarket or items on a menu.
- Numbness or pins and needles can occur in different areas of the body. If the hands are affected, then holding a pen or using a knife and fork may cause some difficulty.
- Heat often makes symptoms worse, so it is important to keep cool on a hot day or turn the central heating down. However, some people find that cold makes their symptoms worse.
- It may be difficult to walk as far, or as fast, as before. A tendency to stumble may mean it's important to concentrate on walking instead of walking and talking at the same time.
- Needing to go to the toilet quite suddenly, or more often, is common. Trips out may need to be organised so that toilets are always close by.
- Sometimes MS can slow down the thinking process, known as cognition. It may be harder to remember the right word or where something has been put. MS can reduce concentration and the ability to think through a complex task. Reducing distractions, like turning off the TV or going to a quiet room, can really help. Also, giving someone more time, and not putting pressure on them, can make a huge difference.
As MS is so unpredictable, many people learn to be flexible and manage their symptoms and the consequences if, and when, they arise. It can be helpful if those around them take the same flexible approach.
How can I help?
It can be better to ask someone what they'd like, rather than trying to work it out for yourself.
They may suggest something you hadn't even thought of. It can be good to show your support - perhaps with a hug, a text, a bunch of flowers or by phoning regularly. You may also be able to do something more practical.
Not everyone will need or want help. Some people don't like a lot of fuss or will want to continue their life exactly as before. Others may only need help when they are going through a relapse or feeling unwell. Bear in mind that, when someone is having a particularly tough time, even talking to a visitor – however well-meaning – can be too much.
You may have the kind of character and lifestyle that allows you to be flexible and step up to help out at short notice. Alternatively, you may prefer a more structured commitment, where you take on a task that needs to be done on a regular basis, like cutting the grass or doing a monthly grocery shop. Although you will have the best of intentions, it can be good to think very realistically about what you can reliably offer and make this clear. This could save embarrassment on both sides and avoid a mismatch of expectations.
Try to be alert to the limitations that MS can impose. For example, someone may feel OK when you arrive but may suddenly get very tired and need to rest alone. This is not a reflection on your visit, just a common consequence of living with MS. Doing regular short visits can be less tiring than fewer longer visits.
You might like to bring a few essentials like milk and bread, a bit of a treat or a contribution to a meal together. Could you take someone out for a drive, if they are often confined to the house? They might like to go to the cinema, sit in the fresh air or have lunch out. They might like to come to your house, but can't get there without a lift.
There is no formula for what is the best approach. Everyone is affected differently by their MS, so their needs will be different too. A willingness to help, and a sensitivity to their individual needs and wishes, are the cornerstones of providing appropriate support.
How can I learn more about MS?
It is important to use reliable sources of information like the MS Trust, other national MS societies, the NHS and government websites.
Sites with unreliable or misleading information can be difficult to spot, as they may sound very convincing especially when you are new to the topic.
The MS Trust Information Team is here to answer your questions. They could be something big or small, really general or very specific about MS. We specialise in health information and we can usually point you in the right direction for information on other topics related to living with MS.
You can reach us by emailing firstname.lastname@example.org or by calling 0800 032 3839 or 01462 476700 (Monday to Friday 9am to 5pm). You can leave us a message outside these hours and we'll get back to you.
Information from the MS Trust
We have a wide range of printed and online resources that may be helpful.
The Making Sense of MS resource provides introductory information on the topics that are most relevant to people who have recently been diagnosed. From there, you can follow the pointers to more detailed information if you need it.
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More about Making Sense of MS
Making Sense of MS is our suite of resources for people who have recently been diagnosed with MS
Order this information sheet in print for free or read it as a PDF
View all our newly diagnosed resources and order them in print for free or read them as PDFs
Visit the home page for people newly diagnosed with MS to browse information online
Browse our video collection which features people with MS talking about their diagnosis and also MS specialist health professionals
This page will be reviewed within three years