MS on your mind

Coming to terms with MS

Adjusting to and living with the uncertainty MS can bring is not always easy. Some changes in how you think or feel may be natural reactions to this, while others may be caused by MS itself. This page looks at what some of those difficulties are and how to cope with them.

The impact of MS

Everyone reacts to a diagnosis of MS in their own way. Emotional reactions are normal part of anyone's life, but living with MS may make particular demands on your ability to adapt and maintain an emotional balance. How you respond will depend on how MS effects you and how you usually cope with what life throws at you.

You may feel anger, anxiety, or sadness following diagnosis. You may experience shock, depression or relief. You may feel overwhelmed or confused. Sometimes you may feel nothing at all, or want to avoid thinking about MS altogether. These are all normal responses. Such feelings will come and go, varying over time. There is no fixed pattern and people react in different ways. This can be hard for family and friends, who may also be going through similar emotions themselves.

Adjusting to changes

You may feel that you will never really come to terms with having MS. Its variability and unpredictability may mean you are having to cope with constant changes. You may worry about how you will manage the future.

Talking to other people may help you to understand how normal your feelings and thoughts are, and how they are affecting your daily life. It may also give people close to you a better understanding of your situation. You could also let them know when talking about MS is difficult for you.

Getting help

Some people find it difficult to talk about what is going on inside. If this is the case, it may be easier to talk to someone who is less close to you. Support from a trained counsellor can help you to explore your thoughts and feelings, or to clarify them before talking to family and friends.

Psychologists and psychiatrists can treat specific problems such as anxiety or depression. Both specialise in how we function mentally and emotionally. The main difference is that psychiatrists have a full medical training as well.

Acceptance

Accepting that emotions and fears are part of having MS is the first step in finding ways of coping with them.

Accommodating or accepting MS does not mean 'giving in' to it. It is a waste of energy to fight things that you cannot change. By finding ways of adapting, and recognising when you need help, you can make the most of your life.

Living with extremems

Directly or indirectly, MS can affect your mood, emotions and thought processes. Changes in the way you think or feel may be a response to living with MS or may be a direct result of neurological factors.

Emotions and mind

For some people, depression may be a reaction to the stresses that MS places on them. The consequences of living with MS can sometimes be painful, disturbing, fatiguing, intrusive or even embaressing, and it is quite normal for this to affect how you feel and react.

Some MS symptoms, such as fatigue or pain, may be difficult for other people to comprehend. They may find it hard to make sense of your experience or to know how to offer help. An apparent lack of sympathy or understanding from relatives and friends can cause you additional stress or anxiety.

Cognitive problems

'Cognitive' refers to the range of mental processes by which we all reason, think, and approach problems. Cognitive symptoms may affect the content of your thoughts, your memory functions, or your ability to concentrate or plan ahead.

Mood swings

Some people find that their mood varies unpredictably, swinging from euphoric highs to depressive lows. They may fall into exaggerated patterns of denial or acceptance, or feel they no longer have the stamina to face life. They may become depressed for long periods, or become withdrawn, irritable and angry.

Reaction to stress

Feeling depressed or low is normal for everyone from time to time. Living with the unpredictability of MS means that up to 50 per cent of people with MS may experience severe depression at some point.

Severe depression is the kind that prevents you functioning normally, or continues for more than a couple of weeks. It may be signalled by sleep disturbance, weight fluctuation, anxiety or mood swings, and life may seem bleak or empty of pleasure. As well as making you feel blue or sad, severe depression can result in or be caused by cognitive problems.

The MS factor

In some cases, emotional or cognitive symptoms may not be caused by depression, but by MS inflammation or damage to myelin in the brain.

Whatever the cause, these symptoms are neither linked to an overall worsening of MS, nor are they an indicator of disability. They can occur alone or with other symptoms. Like any other symptoms, they can come and go, and may be more noticeable when you are fatigued.

Getting help

It is important to seek informed and professional advice for emotional or cognitive problems. Psychologists or psychiatrists specialise in assessing how far symptoms are part of reactions to problems, and how far they may be due to demyelination. Through them you can access appropriate and effective help, whether from medical treatment or other therapies.

Help for cognitive difficulties

Cognitive symptoms can range from barely detectable difficulties to more severe problems which affect day to day life. They can usually be managed successfully and treated in a number of ways. Widespread, general decline of cognitive functions is rare in MS.

Cognitive problems

The most common cognitive problems affect concentration, reasoning, speed of processing and short term memory. Most people have more problems with recall (unprompted remembering) than recognition (prompted remembering). For example, a phone number may be adequately stored, but you cannot retrieve it easily. This can affect what information you volunteer to others, or mean that you may forget appointments or essential activities.

Other difficulties can include poor concentration, planning or problem-solving. It does not mean that you are losing your mind if you have memory or concentration problems.

Tackling depression first

Depression can also affect how you think, reason and remember, so cognitive difficulties may improve or disappear if any depression is treated. If they do not, it may be because they are being caused directly by MS, rather than by depression.

Correct diagnosis

It is important to get a correct diagnosis so that you can access appropriate treatment. This should be done through your doctor, who can refer you for what is known as a cognitive assessment.

Cognitive assessments

A cognitive assessment consists of several standardised tests which compare you with average results for people of your age. These tests can identify specific difficulties and help doctors to decide on treatments needed. The aim of the tests is to understand any problems you have; they are not intended to catch you out!

You will be asked about difficulties you have noticed. You may be given a screening test to check your memory and your ability to process information. You might be asked to come for more extensive neuro-psychometric tests, which are designed to detect particular patterns of difficulties (e.g. naming objects).

It may be useful to bring along someone who knows how you cope with day-to-day activities. He or she can give their view and also add anything else that you may have overlooked.

Treatments

Whatever the cause, there are a variety of effective treatments, although services available vary around the country.

Your doctor may prescribe non-addictive antidepressants to help you through a bad patch, usually for about six months for maximum effectiveness.

Cognitive therapy can give you fresh insight into problems, by helping you to learn new ways of approaching daily life and managing difficulties. Treatment usually lasts about six weeks and can equip you with skills you can use throughout your life.

You may also benefit from seeing a counsellor or therapist, either on your own or as part of a group, in order to explore your thoughts and feelings.

Your medical support team (GP, psychologist, neurologist, psychiatrist or therapist) will take accout of how you see your difficulties and how they affect your life, in order to tailor solutions to suit you.

Strategies for coping

It is useful to have a few tried and tested means of dealing with difficulties. Recognising problems or stressful situations, and thinking in advance about how to handle them, will help you cope better.

Dealing with pressures

There is no right or wrong way to deal with difficulties or stressful situations; you have to find what works best for you. Some problems can be dealt with by adjusting your daily routine or home environment, or by asking a friend or family member to help out.

Other problems may be harder to deal with. You may not be able to change what is happening to you or prevent another relapse, but there are ways to deal with how you feel about it. Letting off steam to someone, meditating, losing yourself in some activity, or relaxing with friends are all positive ways of coping.

Being realistic

Hoping for a lottery win or a miracle cure may not help much in dealing with your day-to-day situation, or give you control over it. Identifying what you can control and manage, and what you cannot change may be more helpful.

Taking stock

How do you usually cope with unexpected or problematic situations? Could you deal with things in a more constructive way? It's a good idea to take a fresh look at how you tackle things, at what your priorities are and what support or help you need from others. Even if you cannot make them disappear, problems may be easier to manage if you can keep an open mind and think ahead.

Thinking ahead does not have to mean that you are always expecting the worst; but it can make predictable trouble easier to deal with. You may already do this to some extent, by always checking where the nearest loo is, for instance, or by knowing who you can rely on in a crisis.

Try to plan the best use of your day, and include time to relax. Don't worry if you don't get round to minor tasks as often as you think you should. Try to save your energy for things that are most important to you.

Prompts and checklists

Use check lists to keep track of things you need to do (such as keeping appointments, taking medicines at the right time, etc). You could ask someone else to prompt you and jog your memory, or use an alarm system, rather than having to remember everything yourself. A variety of prompts may help best.

If concentration is a problem, be open about this with people you trust. If your attention wanders, a prompt (e.g. through a joke or agreed signal) from someone else may help you to refocus your concentration.

If you are learning a new skill, identify which methods help you most. Some people find verbal instructions (backed up by prompt cards or check lists) easier to remember than having something demonstrated to them, for instance.

Listen to your body

Your body can be a good indicator of when you need to slow down. Resting when you need to gain or conserve strength does not mean that you are giving in. On the other hand, slowing down all the time may leave you feeling blue and you may miss out on things you enjoy. Decide how long you need to rest, then get up and do something constructive or pleasureable.

Other people

You may sometimes need to accept help from others, which is never easy. Learn to recognise when you need support. Identify those people you can rely on, and agree with them how you will go about it.

It is often better to build up a network rather than relying on just one person. This support network may include friends and family, other people with MS who are on your wavelength, or trained and sympathetic professionals. Knowing you can call on someone you trust will help you make the most of life.

Getting a break

It is also important to have your own space. People in stressful relationships often need time apart to do other things. Regular, planned breaks, even for just a few hours, can take the pressure off and improve everyone's quality of life. Contact your local social services department for an assessment if you need help at home.

Enjoying life

While you may sometimes need to mourn the loss of things most people take for granted, try to focus on what you can do and enjoy. You may find that MS means you have more time to spend with your family, to try different hobbies or develop new skills, for example. Having MS does not mean you have to stop enjoying life.

© MS Society