MS and your feelings. An introduction to. Being diagnosed with MS can affect your feelings

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1 An introduction to MS and your feelings Being diagnosed with MS can affect your feelings It is common to experience a range of powerful emotions after being diagnosed with MS. It will take you time to adjust and come to terms with MS being part of your life. This information suggests things that may help and the symbol will point you to further resources. People who have lived with MS for a while often say that, although they have MS, MS does not have them. They see MS as only one thing about them and not the defining thing. These can be useful thoughts as you live your life with MS. I m feeling emotional I m feeling emotional about my diagnosis Everyone reacts differently to their diagnosis. You might feel angry, anxious or tearful. You might feel relieved, especially if you ve spent years trying to find out the reason for your symptoms. You may feel shocked, especially if your symptoms started very suddenly and your diagnosis arrived within days. You may feel surprised or upset if you were given a different diagnosis previously and now have to adjust to a new diagnosis. You may feel like it s unreal or happening to someone else. You may experience a lack of emotion. Whatever you feel, it s OK. There is no correct way to react to the news of diagnosis - being diagnosed with MS is a lot to take in. Some people say that adjusting to diagnosis with MS is similar to the grieving process where people are said to experience five stages of grief. The stages do not occur in a set order, you may go back and forth between them and you may not experience them all. The stages are: - Denying that something has happened. This allows us to isolate ourselves from the cause of our pain and buffers us from the initial shock. - Feeling angry. This anger may be directed at other people or at inanimate objects, even though we know, in reality, that they are not to blame. - Bargaining. This is a way of feeling more in control and can cause us to think things like If only I had seen the doctor sooner or If only I had got a second opinion. - Depression or low mood. - Acceptance. This allows us to become calmer and, although not happy, feel better able to go on with our lives. What happens after diagnosis?

2 Are you worrying about something in particular and is there anything you can do to improve things? I m feeling emotional dealing with my symptoms Dealing with symptoms can be very draining. Fatigue, pain, depression, anxiety and other symptoms can make you feel fragile. You may not be sleeping well and that can make it even more difficult. You may find that your symptoms vary from one day to another or even from one moment to another. This can take some getting used to and should become easier to manage as time goes on. It can be good to think about what might be causing you to feel emotional. Are you worrying about something in particular and is there anything you can do to improve things? Could you get treatment for your symptoms? Could you improve your bedtime routine so that you have a better chance of a good night s rest? Are there things you can do yourself or is it time to consult a health professional? Treating symptoms Depression factsheet Living with fatigue Pain factsheet Sleep: I m feeling emotional about my future You may be worried about the future and what MS may mean for you. This is a natural and common response to diagnosis. Some people say that getting used to the uncertainty that comes with living with a long-term condition, like MS, is similar to the grieving process (see above). Life never has a fixed path but significant events, like a death in the family or diagnosis with a long-term condition, highlight uncertainties for us. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now. If you are considering making changes to your life, you might like to read our information on life choices. MS and life choices I m feeling down Feeling down is common in MS. It may be the result of dealing with your diagnosis or troublesome symptoms. However, depression can be a symptom of MS in its own right if an MS lesion has occurred in an area of the brain concerned with mood. Depression can come on suddenly or it may creep in bit by bit without you realising. It s OK to deal with low mood in your own way to begin with by talking things through with family, friends or online support groups. Part of the Making Sense of MS series from the MS Trust

3 Difficulties with slowed thinking, such as poor memory, concentration or attention span, can be a symptom of MS. They are called cognitive symptoms. If you continue to feel down or are worried that you are depressed, then seek professional advice from your MS nurse or GP. There are treatments for depression and talking things through with a counsellor or neuropsychologist can make a big difference. About MS Depression factsheet I m not thinking straight Not thinking clearly is common in MS and could be for a variety of reasons. Your head may be in a whirl after the news of your diagnosis and you may not be sleeping well. You may be experiencing an MS symptom called fatigue which is an overwhelming feeling of mental and/or physical exhaustion out of all proportion to the task you ve just done. Difficulties with slowed thinking, such as poor memory, concentration or attention span, can also be a symptom of MS. They are called cognitive symptoms. Both fatigue and cognitive symptoms can affect how you feel so it is good to seek support from your MS team. Treating symptoms Cognition factsheet Living with fatigue Sleep: StayingSmart (for cognitive symptoms): org.uk I feel different Someone s idea of themself as a person relies on a number of things which they think are important such as their job, being a parent or being good at something. When life changes, it can affect your self esteem and your sense of who you are. People tend to feel a stronger sense of loss if their symptoms affect their ability to fulfill the role(s) that they think of as important. For example, if you do a physical job or if you are usually very physically active, then physical symptoms can be more distressing as they may stop you doing what you enjoy most. On the other hand, if you have a mentally demanding job or you are used to relying on your brain power for the things that you enjoy, you may find the more psychological symptoms have a greater impact. What can I do? Symptoms may be restricting what you can do at the moment but that may change. You may find a good treatment which improves your symptoms. You may learn ways to manage symptoms, like pacing yourself to decrease fatigue, so that you can do key activities more easily. You may find another way of doing what you love to do, or need to do, that is easier for you.

4 It may take a while for the news of your diagnosis to sink in, sometimes months, and you may need some space to get your head around it. People who have lived with MS for a while say that the best thing is to find ways to reconnect with the activities and roles that you valued before your diagnosis. This may be in a different way from before. It can be good to actively explore what s possible rather than waiting for something to happen. You could ask people for ideas or explore the StayingActive section of our web site. You could float a few ideas of your own with family and friends. You are the person who knows what s most important to you. This is an area where you can get creative and find ways to be yourself. Working and studying with MS StayingActive: Will I adjust? It may take a while for the news of your diagnosis to sink in, sometimes months, and you may need some space to get your head around it. Accepting that you have MS can be the first step in moving forward. Living with MS can be unpredictable and this can take some getting used to. People who have lived with MS for a while often say that the most important thing is to live each day as it comes rather than worrying about what might, or might not, happen. It can be helpful to learn about MS when you are ready. You may want lots of information straight away or you may prefer to go one step at a time and just focus on what s most important to you. This can help you understand MS and then help you to explain it to others. What happens after diagnosis? Who can I talk to? Many people feel that they need to keep strong and hide their emotions. It s probably best not to bottle up your feelings but to share them with someone that you trust. This could be someone in your personal life or a professional, such as a counsellor, or, perhaps, someone who has been through a similar experience. There is support available from your MS team, the MS Trust and the wider MS community. Your friends and family will hopefully support you although they may also be adjusting to your diagnosis. You may worry that you will become emotional if you talk about your MS. However, most people will try to understand and be supportive. You could give them some information about MS if you think it might be helpful. Making the most of appointments Telling people A short guide to understanding my MS (to give to others)

5 Practice relaxation techniques, mindfulness or meditation. Listen to soothing music or take a quiet walk. Whatever works for you. What I can do myself? We have a few suggestions so you can choose the ones that you think might be helpful for you. Be kind to yourself - Try to look after your body by eating healthily, not drinking too much alcohol or smoking. - Try to look after your mind too. Practice relaxation techniques, mindfulness or meditation. Listen to soothing music or take a quiet walk. Whatever works for you. - Go outdoors. It doesn t have to be far or for very long, but fresh air and connecting with the outside world can refresh you and clear your head. - Chill out. You are allowed to rest, relax, pamper yourself and zone out sometimes. This can be the tonic that allows you to pick yourself up again in an hour or in a day or two. Express how you feel - Find ways to release your tension. You could thump a cushion, turn the radio up and scream or sing, keep a diary, start a blog, take some exercise, cry. - Share how you are feeling with someone you trust. It could be a loved one, a health professional or someone who has had a similar experience to you. - Be respectful of others. Try not to take your feelings out on those around you. Ask questions and learn about MS - Get any information that you need. You may feel more comfortable with a topic if you know more about it. - You are the expert on your own MS and your own priorities. Bear this in mind if you feel that others are trying to suggest options that you are not comfortable with. Get support - Get treatment for any troublesome symptoms. Reassure yourself that you have professional support and are learning to manage your MS well. - Ask for some help or take offers of support if you d like to. If you are doing OK at the moment, you can always say that you ll get back to people if you need their support in the future. - Take a problem solving approach. Think about what s bothering you most? Is it something you can sort out yourself or will you need to ask someone else? Is it something that can t be sorted out? Is it something which seems overwhelming at the moment? If it seems like a huge problem, tackle a small piece at a time. If it can t be sorted, can you accept this and let the issue drop?

6 Live in the here and now and make the most of today. Make a few plans, pick up the phone, take action to make it happen. Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T T E. info@mstrust.org.uk Registered charity no Like yourself and your life - Keep a sense of normality. Do the things that you usually do. Do the things that you like to do. For most people, life after diagnosis does not have to be different from life the day before diagnosis. - Think about your priorities in life. What, and who, is important to you? What would you like to do that matters most? - Learn to say no! And don t beat yourself up afterwards. You don t have to do everything try to keep to your priorities. - Do something new. Take up a new hobby or a challenge. It doesn t have to be running the marathon (although some people do), it can just be something that you d like to do. It can be good to have a new focus for your thoughts and something to look forward to. Living well with MS Publications for people with MS from the MS Trust Telling people Treating symptoms MS and life choices Going forward It can be good to live in the here and now and make the most of today. Make a few plans, pick up the phone, take action to make it happen. Making Sense of MS 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 MS and your feelings 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. Produced by VerdiCotts Design MS and your feelings k