Living with MS > Coping with Emotions
For many people, living with MS can cause a range of emotional changes. Some of
these changes may be a reaction to being diagnosed with MS, experiencing MS
symptoms, or they may be caused by changes in the brain as a result of MS
disease or medications that are used to treat MS.
Experiencing emotional changes can be as frightening as having physical symptoms if you are unsure about what is happening or what you can do. There is support available that can help you and your family to understand and cope with emotional changes.
Common emotional changes experienced by people with MS are outlined in this section, along with what you can do to help cope with these changes.
Emotional Reactions to MS
MS is an unpredictable disease that may result in disability for some people, so it is normal and common that people who have this condition experience strong emotional reactions after they are diagnosed or when they have MS symptoms. Some of these emotional reactions can include feelings of fear, anxiety, denial, anger, grief, sadness or guilt.
Most people with MS find that these emotional reactions reduce over time as they learn more about the condition and how they can manage their symptoms. Seeking support from close friends and family or from a healthcare professional can help you to cope with how you are feeling.
There are a range of books and other publications about MS and emotions, and some of these are available in our Library. You may also find it helpful to read some positive stories about how other people have coped with situations that are similar to your own.
If your emotions are affecting your personal life, relationships, employment, or otherwise causing you concern, you may benefit from talking to your GP about treatment or other services such as counselling.
Your MS Field Worker or MS Nurse can provide you with information about what to expect when you are diagnosed with MS or having MS symptoms, and can help you to discuss these changes with your partner or family.
Emotional Changes as Symptoms of MS
Some people with MS can experience on-going emotional changes that are more than a reaction to having MS. These emotions may be a result of changes in the brain or brain chemicals that are caused by MS itself. One of the most common of these symptoms of MS is depression.
Depression
Depression can happen to anyone at any stage in their life, even when they are coping well. Having depression is not a sign of weakness or an inability to cope with difficulties. Depression can be effectively treated if it is brought to the attention of a healthcare professional such as your GP.
Most people experience feelings of low mood at times when something in life is not going well. At these times we may even say that we feel depressed. However, it is generally understood that this it is different from the experiences that medical professionals sometimes refer to as 'clinical depression'.
The symptoms of depression include having some of the following experiences present most of the time for a period of two weeks or more:
The symptoms of severe depression include having some of the following experiences for a period of two weeks or more:
- Low mood
- Loss of interest or pleasure
- Change in appetite with significant weight loss or gain
- Not being able to sleep or sleeping more than usual
- Feeling restless or that things are happening more slowly
- Loss of energy or fatigue
- Feelings of worthlessness or guilt
- Trouble thinking or concentrating
- Thoughts of death or suicide
If you have several of these symptoms, or you think you may be depressed, it is important that you consult your GP as soon as possible or speak to another healthcare professional or support service.
Depression can be effectively treated in people with MS by medication or psychological therapy, or both. Most medications to treat depression can be safely taken at the same time as disease modifying treatments for MS.
If you are currently prescribed any medications for MS or any another medical condition, it is important that you consult your GP before taking natural supplements for your mood, such as St John’s Wort. Some natural supplements can affect your prescribed medication.
Mood and behaviour changes
In addition to common emotional reactions to MS and depression, damage to the central nervous system caused by MS disease can result in emotional and behavioural changes. While these types of symptoms are less common, they can cause significant distress if they are not recognised or treated.
Some people with MS experience uncharacteristic mood swings, where emotions change quickly from one state to another. Others describe emotional upheavals, like bouts of anger or heightened sensitivity, where they easily become very emotional and find it difficult to stop or control their emotions.
In its most extreme form, this type of behaviour is known as emotional lability. People with this symptom find that their emotions are easily aroused, freely expressed and tend to change spontaneously. For example, they can easily burst into tears or quickly become very angry over something in a way that seems out of proportion and out of character.
Other types of emotional and behavioural changes that are thought to be caused by nervous system damage include uncontrollable and inappropriate laughing or crying, inappropriate sexual or aggressive behaviours, and generalised euphoria. These involuntary emotions cannot be controlled by the individual, and may not reflect their state of mind at the time or their normal behaviour. Fortunately, these extreme emotional changes are rare.
It is hard to separate mood changes as a reaction to the difficulty of living with MS from emotional symptoms of MS such as lability. Whatever the cause, emotional changes can be very distressing to the person with MS as well as those close to them. It is important to seek advice from a healthcare professional - most emotional changes in MS can be effectively managed with either medication, psychological therapy, or a combination of both these strategies.
Effect of drug treatment on emotions
Some of the medications used in the treatment of MS can affect emotions, mood and behaviours. These side effects do not affect everyone, but some changes are considered to be common.
For example, steroid treatment of relapses can cause hyperactivity or depressed mood. Drug treatment for muscle spasticity can cause hallucination or agitation if treatment is stopped suddenly. For this reason, when stopping medication some drugs need to be phased out over a few weeks.
However, most people with MS can manage their treatment effectively using these medications by keeping their doctor informed of any negative side effects. In the rare case that your side effects are extreme, your doctor will be able to reassess your medication and advise you on your treatment options.