each junction what would be best for you. Living well with MS .... they may provide online reading software which can in
Now you’ve been diagnosed with MS, what happens next? This information will outline your choices, like telling people about your diagnosis and obtaining support from health professionals and others. The symbol will point you to further resources.
What are my options?
An introduction to
What happens after diagnosis?
What happens after diagnosis depends on a number of factors: - What’s going on with your MS. Is it active at the moment or quiet? Are there any symptoms that are troublesome and could be treated? - What you’d like to happen. There will probably be choices that you can make. - What support your MS team can offer and how soon. - What else is going on in your life.
You and your diagnosis Getting your head round the idea of being diagnosed with MS can take a while, often months but sometimes more. You will probably need some time and space to adjust. Being diagnosed with MS may have been a complete surprise or it may have been the largely expected end to a very long journey. You may find that the news triggers memories of earlier experiences, which can strongly shape how you react. You may feel emotional and probably have lots of questions. People who are living with MS often say that the most important thing is to live each day as it comes. Accepting this can be a way to move forward. Getting reliable information is important. You can take your time and gather information at your own pace. You might like to begin with the topics that are most important to you and only explore in depth if you feel you need to or want to. Some topics may never be relevant to you. Life does not stop at diagnosis and work or education, family and social lives will continue. There is no route map available for your journey with MS so you will be able to decide at each junction what would be best for you. Living well with MS Sources of information and support Publications for people with MS from the MS Trust MS and your feelings
The people you have to tell
There are just a few people and organisations that you must tell about your diagnosis straight away.
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 a one, two or three year licence then reassessed. The second group that you should inform about your diagnosis is companies that have issued your insurance including any health 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 claim under some health or critical illness policies as soon as you are diagnosed. Lastly, in some jobs, for example if you are in the armed forces or drive a passenger or heavy goods vehicle, you will need to tell your employer straight away. Some other jobs require a certain level of medical fitness or eyesight. Check your contract and any employee handbook to see if anything like this applies to your job. Telling people Working and studying with MS A short guide to understanding my MS (to give to others)
Telling friends and family Who to tell, when to tell them and what to say are commonly asked questions. It may be tempting to keep quiet but being open about your diagnosis, and how you are feeling, can be really helpful. You might prefer to tell those closest to you first. Family and friends may have been wondering what’s going on. We have information that you can give to people which may help them understand your MS. 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. Remember that they do care about you so try not to take anything inappropriate too much to heart. Telling people A short guide to understanding my MS (to give to others)
Part of the Making Sense of MS series from the MS Trust
Telling others
Getting your head round the idea of being diagnosed with MS can take a while, often months but sometimes more. You will probably need some time and space to adjust.
It’s entirely up to you who you tell and how much you would like to disclose. You may need some time to adjust to your diagnosis and learn more about MS for yourself, before you try to explain it to a wider range of people. You might like to think about when you need to tell, or would like to tell, people that you know less well such as your childminder, football coach or tennis partner. You may like to consider when would be the best time to tell your employer. You may want to tell your manager or close colleagues first, especially if you need time off for appointments or to have adjustments made at work to help with your MS. Sometimes symptoms can be misunderstood, 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 be worried about telling your employer but, as soon as you’ve been diagnosed, you are 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. If you are in education, you might want to think about when is the best time to tell your course provider. Most higher education centres have disability coordinators and advisors who can offer support. For example, if MS affects your sight, they may provide online reading software which can increase the font size or convert text to speech. Similar support should be available in schools, often with the assistance of the local authority. You may not consider yourself disabled if MS has no effect, or only a small effect, on what you can do. However, the Equality Act states that people with MS are included so you are protected by the Act from the point of diagnosis should you need it. Telling people Working and studying with MS A short guide to understanding my MS (to give to others) Equality Act: www.mstrust.org.uk/atoz/equality_act.jsp
Support from health professionals Your MS team will support you. Who you see, and how often, depends on how active your MS is, what symptoms you are experiencing, what treatments are available and the way that the local MS service works. Also, your own preferences should be taken into account, where possible.
www.mstrust.org.uk/makingsenseofms
Hopefully, you already know what will happen next with your MS team, although that may mean waiting for an appointment to come through. If not, you could ask the neurologist’s secretary, your MS nurse or your GP. Making the most of appointments Sources of information and support
What happens after diagnosis.06.14.4K
The choices are yours. Maintaining a positive outlook and getting good information can make a big difference.
You will probably see some health professionals who specialise in MS, like an MS nurse, and possibly some who specialise in a particular treatment, like physiotherapy. You should see your neurologist for a review periodically and may contact your GP from time to time.
Support from the MS community Some people who are newly diagnosed with MS are keen to share experiences or ask questions of other people with MS. Others prefer to focus on their existing networks of friends and family. It’s a very personal choice. Sources of information and support
Looking after yourself Support from others is helpful but there is a lot you can do yourself to be as well as possible. Being diagnosed with MS can knock you for six for a while but it can also be a good reason to look after yourself, physically and mentally. The choices are yours. You have the option to take control of the things that are within your power. It can be helpful to accept those things that you can’t control. Maintaining a positive outlook and getting good information can make a big difference. Making the most of appointments Living well with MS Sources of information and support Treating symptoms MS and your feelings
Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T. 01462 476700 T. 0800 032 3839 E.
[email protected] www.mstrust.org.uk Registered charity no. 1088353
This information is part of a set of resources for people who are newly diagnosed with MS. You might like to look at our introductory resource, Making Sense of MS, which answers the questions most commonly asked around the time of diagnosis. Jane Havercroft What happens after diagnosis? © 2014 Multiple Sclerosis Trust This edition published 2014 This publication will be reviewed in three years. All rights reserved. No part of this book may be produced, stored in a retrieval system or transmitted in any form by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise without written permission of the publisher.
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Making Sense of MS
