Questions about MS? Call us on 0808 800 8000
Man in wheelchair

Coping with loss, grief and guilt

People's reactions to MS, especially after diagnosis, can be very similar to those experienced after the death of a loved one. This can lead to feelings of grief.

Read the latest information about care and support and coronavirus COVID-19

It is important to understand and recognise grief and the emotions it causes. There are also ways of ‘grieving healthily’ - dealing with natural and common reactions to MS.

For a more detailed look at understanding and coping with grief, see our publication MS and your Emotions.

Understanding grief and guilt

Why do I need to understand grieving?

Many people ask the question, ‘Why do I need to understand grieving? MS isn’t going to kill me’.

That’s true, but grieving is a normal response to any loss.

Even though grief is an upsetting experience, it is an important and healthy part of life. Grief allows us to survive change; it can help people to find new and creative ways to deal with their situation.

For people with MS, grieving can be an important part of re-evaluating life, and making the right changes.

In the longer term, grief can be positive.

The grieving process

The process of grief will be different for everyone, but it can generally be broken down into five stages.

Like MS, grief is not predictable and you might not go through the stages in a neat order.

You might find you skip a stage, revisit a previous one or even experience them simultaneously.

The whole process can last from a just a few days to several months.

Here we deal briefly with the five stages.

There’s more in our publication MS and your Emotions

The five stages are:

Denial

This is common straight after diagnosis.

Often people think the doctor has made a mistake or think: ‘This can’t be happening to me’.

Anger

People are often angry with the doctor for giving them the diagnosis, or at themselves, believing they could have stopped MS from entering their life.

Bargaining

At this stage, people try to avoid the inevitable.

They may try to make deals with fate, with their doctors, or with their family: ‘If you help me through this, I will change my lifestyle, exercise more, become a nicer person’ and so on.

Sadness and depression

This is the point in the process when feelings of loss can seem to be too much to bear.

Sadness can sometimes lead to depression. If you’re worried about yourself or someone close to you, speak to you GP, MS nurse or other healthcare professional.

Acceptance

Eventually, people can accept what is happening and feel that they can move forward.

Coping with grief

There are many strategies for coping with grief, like allowing the pain to be there; acknowledging that you are hurting, and facing up to loss.

Here are some other suggestions – for more, see our publication MS and your Emotions.

  • Stop asking ‘Why?’ Instead, ask ‘What can I do now?’
  • Rest when you need to and spoil yourself
  • Ask for help from family, friends or professionals and accept their support
  • Look after yourself - eat regularly and exercise, taking care not to overdo it
  • Keep to your normal routine when you can and take time to socialise
  • Avoid making major decisions
  • Do not compare your grief to other people’s grief – you are unique
  • Remind yourself grief can take time – go through it at your own pace
  • Tell yourself you will survive – this feeling will pass
  • Find one thing to be grateful for every day and keep a list
  • Take time to help others

Feelings of guilt

Sometimes people with MS find they feel guilty.

Some feel that they have let their family and friends down or are somehow responsible for developing the condition.

People may also feel guilty if they think MS has put an extra burden on their family, especially through a changed lifestyle or reduced income.

Family members may also blame the person with MS for difficulties that the condition has created, especially financial or relationship problems. This can make feelings of guilt worse - both for the person with MS and their family.

It can help if everyone in the family learns more about MS, so they know when it is MS that has caused a problem and when it is something else.

Moving on

Some people find that the MS diagnosis provides an opportunity for change in their lives. There are many stories of people changing their career paths, changing their lifestyles, getting fit and so on.

Receiving the diagnosis can be a ‘turning point’ and can be a time where the future is re-evaluated in a proactive way.

Urgent appeal: Help us be there for everyone with MS

Urgent appeal: Help us be there for everyone with MS

£
Donate now
Donation type