Living with MS can affect your feelings. You may experience a range of powerful emotions around your MS and it may take you time to come to terms with MS being part of your life.
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.
Strong feelings of all kinds are part of a normal response to an MS diagnosis or a change in your MS. Here are some ideas that may help you deal with them, and some people you can talk to.
Feelings at diagnosis
Making Sense of MS: In this short film we talk to people about how they felt after being diagnosed with MS.
I'm feeling emotional
I'm feeling emotional about my diagnosis
Getting an initial diagnosis of MS, or being told that your diagnosis has changed from relapsing to progressive MS can provoke strong emotions. You may 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 like it's unreal or happening to someone else. You may also experience a lack of emotion.
Whatever you feel, it's OK. There is no correct way to react to the news of diagnosis.
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 you to isolate yourself from the cause of your pain and buffers you from the initial shock.
- Feeling angry. This anger may be directed at other people or at inanimate objects, even though in reality, it's clear they're not to blame.
- Bargaining. This is a way of feeling more in control and can cause you 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 you to become calmer and, although not happy, feel better able to go on with your life.
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 seem even more difficult. You may find that your symptoms vary from one day to another or even from one moment to another, which can take some getting used to.
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?
I'm feeling emotional about my family
You may be concerned about the impact of your MS on those around you including your partner, children, siblings or parents. You may feel that MS is intruding in your relationships including intimate moments. You may feel different about yourself, or your partner, or you may be worried about how symptoms, including fatigue, pain or continence difficulties, limit your activities.
Being open about how you feel and how MS affects you can be really helpful. You may need to emphasise the unpredictable nature of MS which means that you can't promise that you will definitely do something at a particular time. In return, it's good to encourage your family to be open with you. They will have their own questions and concerns. It can also be helpful to talk to people outside the family to get an independent view. This could be a good friend, other people with MS or a health professional.
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 and when living with MS in the longer term. Perhaps you've had an episode of new or increased symptoms, or experienced a relapse, and that's got you thinking more about what the future may hold. MS is is an unpredictable condition and learning to live with this uncertainty can be challenging.
Life never has a fixed path but significant events or changes highlight uncertainties for us. Try not to focus 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.
Is MS affecting how you feel about yourself?
Making Sesne of MS: In this short film we ask people if a diagnosis with MS has affected how they feel about themselves.
I'm feeling down or anxious
Feeling down or anxious is common in MS. It may be the result of dealing with your diagnosis, troublesome symptoms or the unpredictability of living with a long-term condition. However, depression and anxiety can be symptoms of MS in their own right if an MS lesion has occurred in an area of the brain associated with mood.
Depression or anxiety can come on suddenly or may creep up 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 in online or face to face support groups. If you continue to feel down or are worried, then seek professional advice about treatments from your MS nurse or GP.
I'm not thinking straight
Not thinking clearly is common in MS. You may be in shock after the news of your diagnosis, confused about treatment options or overburdened with other things going on in your life. You may feel stressed and 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.
Taking a healthy approach to living with MS can help you keep a clear mind so you could consider changing your diet, exercise regime and ways of dealing with stress.
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. If life changes, it can affect your self-esteem and your sense of who you are.
You may feel a stronger sense of loss if your symptoms affect your ability to fulfil the role(s) that you think are important. If your job is very physical or you enjoy being active, then physical symptoms can be more distressing. Similarly, with a mentally demanding job or if you enjoy things that use brain power, then 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 helps. 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.
People who've 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. You could actively explore what's possible by asking people for ideas or sharing a few of your own with family and friends or an online group.
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.
Who can I talk to?
It may take a while for the news of your diagnosis to sink in 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.
The sudden appearance of new symptoms or a relapse can knock your confidence in your abilities. 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.
You may feel that you need to 'keep strong' and hide your emotions. However, it's probably best not to bottle up your feelings but to share them with someone that you trust.
Tell your MS nurse or GP about your concerns. They might suggesst referrral to a counsellor or neuropsychologist.
Your friends and family will hopefully support you although they may also be adjusting to the impact of MS. You could give them some information about MS if you think it might make a difference.
You may find it helpful to share your story with people who've been through something similar or to read about the experience of others. You may find that you can be more open than with your family and friends as you may naturally want to protect them. There are online MS support groups, like the MS Trust Facebook group, or you can join a group that meets locally.
What can I do myself?
We have a few suggestions some of which may be helpful to 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 help 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.
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 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? If it seems like a huge problem, you could tackle a small piece at a time. If it can't be sorted, can you accept this and let the issue drop?
Like yourself and your life
- Keep a sense of normality. If possible, do the things that you usually do and things you enjoy
- 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), but choose something you'd like to do. It can be good to have a new focus for your thoughts and something to look forward to.
You may feel that you always have to stay strong for others although this can be a tall order when living with MS. Can you set more realistic goals for yourself? you don't have to be a superhero who deals with everything perfectly or a victim of MS. You are a person who just happens to have MS.
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.
Depression can be common in MS, either as a direct symptom or as a consequence of living with the condition. Find help to recognise and cope with depression here.
Dealing with stress
Stress can affect your health and may make some of the symptoms of MS seem worse. Find out how to manage your stress.
A to Z of MS
The A to Z of MS contains a wide range of information about MS such as, symptoms and treatments, medical information and all aspects of living with MS.