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 understandable, normal and human. Being open about how you are feeling with people close to you, as well as with your GP and other healthcare 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 everyone reacts to and copes with MSA in different ways and at a different 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. Throughout life with MSA there will be trigger points that may increase your personal emotional fragility. For example, having to stop paid work, stopping driving, changes to sexual relationships, changes to your role within the family, needing to use a wheelchair or having to accept care from outside agencies.

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 and 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. 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.

For further support please see the Wellbeing Hub from our partner organisation, Rareminds. This provides information on managing uncertainty, change and loss – www.rareminds.org/wellbeing-hub/uncertainty-change-loss/change-and-loss/.

MSA and Mental Health

People living with MSA may 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 when needed.

Anxiety

“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.

When affected by MSA, feeling anxious and worried can be a familiar feeling 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’. You may be 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 a 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 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. Low mood, depression and anxiety can also contribute to feelings of lethargy or tiredness. It is important to recognise that 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, it can be helpful for the person with MSA and carers to know 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, 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 deeply, 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 ways that low mood and depression may 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 changes with appetite and sleep, or concentration, it is important to consult your GP or Specialist if you experience any 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.

We do not know how many people with MSA have thoughts of ending their own life, but we know that some may do. The reasons behind such thoughts are very personal and individual. They may involve fears about the future, how to cope with what is happening, or grief and anger about loss. Such thoughts might happen for some people after a change in health status, or abilities too.

Talking about any such thoughts and feelings with someone you trust can help them feel more manageable and help them pass. This could be a family member or friend. However, if you are concerned about upsetting someone close to you, a healthcare professional or listening service such as the Samaritans can be a helpful source of support.

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

  • Samaritans: Phone number – 116 123 or jo@samaritans.org
  • 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 distressing or suicidal thoughts, you might feel concerned about how best to talk to them about these. The Samaritans have useful advice on how to start a conversation, and support someone that you are worried about – www.samaritans.org/how-we-can-help/if-youre-worried-about-someone-else/.

Uncontrollable Laughing or Crying (Emotional Lability)

People with MSA may 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 Health Care Specialists or your GP if you experience this, as effective medication may be available.

Hallucinations

People with MSA can describe seeing or hearing things that others cannot. These are hallucinations. Hallucinations are not a symptom of MSA but may occur if the person with MSA has an infection or can be a side effect of a medication you are taking.

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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