MSA Trust

1. The Emotional Impact of MSA

This section describes some of the ways that MSA may affect your thoughts, feelings and emotions from the point of diagnosis onwards. Click here if you wish to go back to the Main Menu.

The Impact of Diagnosis

“It took over 6 years for my husband to get a diagnosis, we were fobbed off so many times”

For many people the moment of diagnosis is a devastating experience, for others it brings some strange relief after months or even years of uncertainty. Whatever your reaction, it is likely that you will never forget the day you, or someone close to you, was given a diagnosis of MSA.
As the news sinks in or as MSA progresses, you may at times be filled with dread, feel angry or frustrated at changes to your body, or upset at the impact on yourself and those you love. You may doubt the diagnosis as you struggle to believe it can be true. Or perhaps you are filled with energy and want to learn all you can about MSA as you try to take back some sense of control. You may sometimes worry about coping, yet there may be other times when you discover a resilience that you didn’t know you had.

Whatever your situation and however MSA is affecting you, a range of intense emotions is absolutely understandable, normal and human. Being open about how you are feeling with people close to you, as well as with your GP and other health professionals, can really help you to manage the impact of MSA.

Feelings of Grief

“I can cope with what is happening to me but find it difficult to cope with the worry and burden I am putting on my loved ones”

Each person is an individual, and not everyone reacts to or copes with MSA in the same way or at the same pace. Even so, there are some thoughts and feelings that many people with MSA have described and that you may recognise, including:

  • A sense of disbelief that comes and goes
  • Worrying about coping financially or practically, fear of being a ‘burden’
  • Questioning ‘why me’ perhaps feeling angry or frustrated when previously simple tasks take longer or become difficult
  • Being worried or fearful of pain or of dying itself, perhaps not talking about it for fear of upsetting others
  • Sadness or frustration at changes in relationships with partners, family, friends, and colleagues
  • Appreciating small everyday pleasures far more than in the past and a desire to make as much as possible of the time available
  • Wanting to plan ahead, as a way of taking back some sense of control.

Many of these thoughts and feelings can be described as ‘anticipatory grief’ as you slowly recognise and grieve for the losses that you face in the present and the future. Grief can take many forms, including tears of sadness or frustration, feeling short tempered and irritable, being withdrawn or lethargic, forgetful or distracted. There may be periods when life feels fairly stable, as well as days of uncertainty and unpredictability as symptoms change, or become more pronounced.

But this is not the whole story. There may also be moments of closeness and humour with family or friends as you overcome challenges. You may share feelings and thoughts that you have not expressed before or may think about how you want the remainder of your life to be, about what is important to attend to. Despite the sadness of anticipated losses, many people find meaning in new ways, perhaps over time arriving at some kind of acceptance or of feeling as prepared as possible for the unknown.

Facing Uncertainty

“It’s tough – it’s exhausting – it’s the unknown”

So much about MSA is uncertain and many people find this one of the most difficult things to cope with. Not knowing which symptoms will emerge or when; how quickly they may progress or even how many years of life are left, are just a few of many questions that are unanswerable. It is possible to spend so much time fearing the future, that worry, and dread can take valuable time and enjoyment away from each day.

It is not possible to predict exactly how your future will be or how you will respond to it and you may discover that the reality, however difficult, is not quite how you expected it to be as you learn to adapt and change over time.

Trying to find ways of living now, yet taking steps to prepare for a changing future is a delicate balancing act and you may find that you move back and forth between the two. Being able to share your worries and to know that support is available while you prepare for the future can greatly help to ease the worry of uncertainty.

MSA and Mental Health

Many people with MSA experience periods of low mood, depression and/or anxiety, yet mental health is often overlooked at routine appointments with health and care professionals. Being able to recognise how MSA is affecting your mental health can help you to seek professional support as and when needed.


“MSA makes me feel very low. I miss going out and doing activities I used to enjoy, such as gardening and socialising with friends and family. I feel anxious a lot of the time as well”

You may be familiar with a gnawing feeling when you are anxious, perhaps your chest tightens or your heart beats faster. This is because when your mind perceives ‘danger’, hormones such as adrenaline and cortisol are released into your bloodstream. This temporarily increases your heart rate, and your muscles tense up to prepare your body to either fight or run away.

Other body functions such as digestion, speech, sexual function, bladder control and thinking can be temporarily affected as the body puts all its energy into ‘fight or flight’. When you feel safer, because the ‘danger’ has passed or because you no longer fear it, your body returns to a more relaxed state. This explains why some symptoms of MSA such as a tremor or speech difficulty can seem temporarily worse in stressful situations.

Feeling anxious and worried is a familiar feeling for many people affected by MSA and it can easily become an unhelpful cycle. Perhaps you find yourself constantly scanning your body to check sensations out of fear of ‘what is coming next’ or are avoiding places and people that are important to you because you are worried what someone might think or how they may react. These are examples of anxious thoughts interfering with your daily living.

Some people feel anxiety in the form of panic attacks, which seem to come from nowhere without warning. A panic attack is where anxiety levels rocket very quickly resulting in strong physical feelings such as shaking, tearfulness, fast breathing (known as hyperventilation) and faster heart rate. Some people feel scared that something really bad is about to happen, which can feel very frightening.

Being in a constant cycle of anxiety or panic attacks can also cause problems with sleep and appetite. Given how much anxiety living with a life-limiting illness can cause, learning ways of helping your body to ‘self-calm is key to taking care of your emotional wellbeing.

There are many ways to help reduce anxiety including breathing and relaxation techniques, self-help, therapy and medication.

If anxiety is affecting your daily living please consult your GP and see:
Section 3: Looking After Your Emotional Health and Well-Being/Relaxation
Section 5: Professional Support for Your Emotional Wellbeing

Fatigue, Low Mood and Depression

The feelings of fatigue that are common with MSA can contribute to feeling low in mood. Conversely, low mood, depression and anxiety can contribute to feelings of lethargy. Carers may also feel very tired or low at times, due to the ongoing physical, practical and emotional support they are providing.

Life is of course not only about MSA, and there may be other family and life events that can affect your energy levels. It may feel as though you have no energy left to spend time on activities that can help your emotional wellbeing. However, knowing your limits, allowing enough time for rest and relaxation and asking for or accepting help with tasks that others can carry out, can help reduce feelings of exhaustion.

Depression is a word commonly used to describe feeling very low, where life has lost meaning or joy, perhaps of feeling worthless or a burden, certainly of feeling consistently negative and hopeless about the future. Physical symptoms such as changes to appetite and sleep patterns are often affected, and it is not uncommon to spend lots of time thinking and ‘ruminating’, perhaps losing interest in people and in activities that have previously brought pleasure.

“I have found myself emotionally numbed, not caring about things that I previously would have been incensed by/excited by.”

You may recognise having had some of these thoughts and feelings at times, as part of the process of grieving, for what has been or will be lost in the future. However, if these persist you may be experiencing depression and may need some additional support. There are a number of ways that low mood and depression can be improved, including self-help strategies such as practising mindfulness or relaxation techniques, therapy and/or anti-depressant medication.

Because MSA itself can also lead to some changes such as to appetite and sleep, or to concentration that are similar to symptoms of depression, it is important to consult your GP if you experience these symptoms.

If low mood or depression is affecting your daily living please consult your GP and see:
Section 3: Looking After Your Emotional Health and Well-Being/Relaxation
Section 5: Professional Support for Your Emotional Wellbeing
• MSA Trust Factsheet: Fatigue – Multiple System Atrophy Trust

Suicidal Thoughts

It is not unusual for some people diagnosed with MSA to have fleeting or occasional thoughts of wishing their life was over. If you experience this you will probably find that it is overtaken by a stronger desire to make the most of the life you have.

This is very different from feeling an overwhelming impulse to harm yourself because you are in emotional pain.

If you are finding it hard to find reasons to keep on living and have thoughts of suicide please do reach out immediately. Crisis support is available from:

  • Samaritans: Phone number – 116 123
  • Your GP or a health professional that you feel able to talk to.
  • NHS: 111
  • Emergency Services: 999

If you are worried that someone you care about is having suicidal thoughts it is safer to ask for support now rather than to delay seeking help and advice.

Uncontrollable Laughing or Crying (Emotional Lability)

We do not yet know how brain changes caused by MSA may directly affect emotion.

However, a number of people experience strong emotions such as laughing or crying uncontrollably, which can feel exaggerated or may not reflect inner feelings. This can be upsetting and may affect your confidence in social situations. Please speak to one of our MSA Nurse Specialists or your GP if you experience this, as effective medication is available.


A very small number of people with MSA have experienced seeing or hearing things that others cannot. Hallucinations are not a symptom of MSA but can be a sign of other health issues such as infection or side effects of medication. If you experience this or if you are caring for someone with MSA and you notice these symptoms, please seek medical advice.

If you have any concerns about your mental health, please consult your GP and see:
Section 3: Looking after your Emotional Health and Wellbeing
Section 5: Professional Support for Emotional Wellbeing

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information in this resource, please contact us and we will do our best to help you.

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