MSA Trust

2. MSA and Relationships

This section explores the impact of living with MSA on your relationships and on people close to you and suggests ways of letting people know how MSA is affecting you. This includes some ideas for talking about MSA to children and young people, and a section exploring how it can feel to support a person with MSA. Click here if you wish to go back to the Main Menu.

Coping styles

In your closest relationships, you each face the challenges of change and loss; of the life you have been used to, perhaps of imagined futures or retirement plans, of your health, and ultimately of the loss of each other. It can be painful to think or talk about the losses that you may face, and each person will respond in their own way.

Your personality, previous life experiences, culture and how supported you feel, are all likely to contribute to the ways you react to living with MSA.

Different ways of coping can sometimes lead to tension in relationships with partners and family members. A common example is where one person wants to look ahead and start making plans for practical adaptations as it will help to be better prepared, whilst the other refuses to discuss it and seems to be ‘in denial’.

Denial is a way of coping, a need for time to absorb the shock and news, and some people can feel stuck there for some time. However, denial is not the only stumbling block, feelings of failure or shame may feel too painful to face, or a family culture of not talking about illness or difficulties may make it harder for someone to talk openly.

If you and someone close to you have very different ways of coping it may help to start by telling them what you think your coping style is and asking them to tell you about theirs. Listening carefully can help you to understand each other better and can begin a conversation that will continue over time.

If it feels awkward or you are not sure how to begin to discuss your concerns, you may find it helpful to ask a professional to start the conversation for you, with family members present. For example, your speech and language therapist might be able to explain to family members or your partner that conversation may become harder over time, so it is helpful to begin conversations about what is important to you as early as possible.

Personal Care

Many people find that one of the hardest things to cope with is the loss of physical independence and the need for help with personal care. If you are mainly being cared for by someone close to you this may feel awkward at first as the balance of your relationship may change. Feelings of guilt or frustration about needing increasing care are very common- even though MSA is not something you could have prevented or had any choice in. The person caring for you may also have feelings of guilt, for being well when you are not, or for getting tired or frustrated when they know how many challenges you face.

“Unfortunately, your relationship with your husband becomes more as a carer than a wife. However we remained very close despite the challenges”

If your partner is caring for you it may not always feel easy to move between the roles of partners, carer and patient. You may find that intimacy and sexual intimacy may be affected, partly due to MSA symptoms but also as a result of the shifts in your relationship or of feeling anxious, low or physically tired. Being able to communicate with each other can help avoid feelings of rejection and can help you both adapt to changes in your relationship.

“My sex drive is diminished and I have anxiety over my qualities as a husband/provider”

Whether support is being provided by a partner, family or friends, there may be some aspects of your personal care that you would prefer to be given by someone outside of your family or close circle, so do try to be open about this and explore your options together.

Despite the pressures, your close relationships can strengthen and deepen as a result of facing the demands of MSA. You may find that making memories together becomes even more important and that you can both experience many moments of humour as well as of affection, compassion and tenderness.

Being open and able to share your concerns or worries can be a relief and can help you support each other. However great the impact of MSA, the condition does not define who you are, and it may help to remind yourself of the qualities you value in each other as you work out a way forward.

At different times you may each benefit from support for your emotional wellbeing, perhaps from a counsellor, or from someone you trust.

Also see:

Letting People Know

You may have been putting off telling some people about your diagnosis, perhaps worried that you or they might get upset, or that they will treat you differently. If you are still at work, you may be worried about how your employer or colleagues may react. You will probably feel great relief once you have had those difficult conversations and can then be more open.

It is of course your decision who to tell and when and what to say. Some people find it easier to write down some notes for themselves on how they wish to begin a conversation, or to give the news in an email or letter. It may help to ask yourself if roles were reversed would you want to know? Would you prefer to be kept in the dark? How would you like to be told?

If you are willing to talk about how MSA is affecting you, it can help to let friends and family know that it is ok to ask questions, or you may want to suggest they take a look at the MSA website. If you have a large family or circle of friends, you may find over time that repeated questions about your health are tiring to deal with. Some people have found that posting a regular ‘update’ on social media can help.

Some ideas about how to start difficult conversations can be found at:

Talking to Children and Teenagers or Young Adults

Talking to your children or grandchildren about illness and dying can feel especially difficult as your natural instinct will be to protect them from pain and sadness. However difficult it is, they will cope better if they have some information about how MSA is affecting you.

Letting children know that it is ok to feel sad or angry and that there is no right or wrong way to react, will help them to cope with their feelings. However much you want to cover up, if you are asked direct questions about your health it is better to be gently honest in an age-appropriate way. It is also fine to say ‘I don’t know’ if you do not know the answers.

Reactions may vary, from becoming very protective or worried, to seeming angry or avoiding you for a while. Just as your feelings may come and go, it is the same for children and teenagers, who may need time to believe or understand what is happening.

Having a box or jar for questions or worries that anyone in the family can put messages, drawings or questions into can make it easier for conversations to get started. Over time you may find that it becomes easier to talk, laugh or be sad together. Children and grandchildren may in the future wish they had asked you things about your family or history, so you may wish to record or share memories that can be passed on through the generations, and to share time together that will help build lasting memories.

Children, whatever their age, and whether or not they ask questions and even if they appear ok, may also benefit from some additional emotional support or counselling, so that they can talk about their own thoughts and feelings without worrying that it will upset you or your family members.

The MSA Trust has developed a Children’s Activity Book for children aged 4-11 can help you to have conversations about MSA. There is also a web hub for 11-17 year olds, which aims to answer some of the questions people in this age group may be asking.

Also see:

Supporting Someone with MSA – The Impact on You

If you are supporting someone who is living with MSA it is likely that you will share many strong emotions as you both face uncertainty and loss, even if in different ways.

Witnessing the impact of MSA on the person you care about, coping with the effect on your relationship and on your own life and future, can at times bring a rollercoaster of feelings. These may range from worry, frustration, sadness and despair, to joy, pleasure or relief.

As well as the emotional impact on you, caring for another person can be very tiring, and you may at times question whether you are ‘cut out’ for it. If you are working, studying, looking after other family members or have a health condition yourself, the pressures can feel especially overwhelming. The person you care for may also be struggling with feelings of guilt and worry for you, yet may at times seem unaware of your needs, perhaps preoccupied by their own challenges.

“We had a carer to help me every morning – this really took the pressure off. I knew if I had ever been ill someone else knew how to care for Geoff. It was such a relief.”

It can be easy to overlook your own emotional health and wellbeing, to believe that there are no ways you can be helped, or to feel guilty for feeling low or for wanting time out for yourself. However, it is very important to consider your own needs both for yourself and for the person you are supporting.

Caring for your emotional health and wellbeing can help you to enjoy and make the most of the time that you have with the person you care about. Being able to talk openly and share your grief rather than ignore or overlook it can come as a relief to both of you. There may also be times when counselling or emotional support can help and there are organisations that provide support to carers as well as local support groups in some areas.

You may not see yourself as a carer or be aware of the support available to anyone who looks after a partner, family member, friend or someone else who couldn’t manage without their help. If children under 18 help look after a relative with MSA, such as doing some tasks around the home, they may also be entitled to receive help and support, including emotional support.

Our Social Welfare Specialist can give you information about help and support for carers, and also see:

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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