Multiple Sclerosis: friends & family experiences

MS: dealing with emotions

When somebody is diagnosed with a long-term condition they, and people close to them, can experience strong emotional reactions. People need to adjust to a new way of seeing their lives and their relationships, which can be hard. As the condition develops over time people go through a range of emotions and there may be good days and bad days. Relatives and friends spoke to us about their own emotional reactions, and those of the person with MS. They also told us about problems with memory and thought processes that they were seeing in their relative, and how they dealt with their own reactions to this.

Relatives may feel they want to hide their own feelings of being upset or distressed and to ‘be strong’, both at the time of diagnosis and as the condition progresses. Several people talked about putting their own needs and emotions second because they thought it was much worse for the person with MS.
Louise Z’s husband was distressed and kept crying, in disbelief, when they heard about their son’s diagnosis. Louise herself initially felt numb but, partly as a result of other family and work pressures, became ill with anxiety and depression. Carole cried every night as a teenager because she had no one to talk to about her ‘frightening’ experiences of living with her mum’s MS. She felt relieved when her mum eventually went into long-term care. Morris finds it ‘heart wrenching’ to see his dad’s progressive disability. ‘I don’t cry when I’m there,’ he says, ‘but I cry when I leave.’ 

People also felt angry and resentful on occasion, both for themselves and for the person with MS. Dave talked about ‘frustration with the situation, the disease, with yourself’. Feelings of fear for the future and helplessness were also described. When her husband was diagnosed, Sarah Z felt an ‘emotional rollercoaster of fear, anger and concern.’ Years later she felt outraged when her husband died, from what she saw as preventable and treatable complications of bowel surgery. Alice also feels angry sometimes but she tries not to dwell on it.
Some people talked about feeling guilty that they didn’t do enough to help their relative with MS even when, like Anita, they were actually doing a lot. Carole felt guilty that she was relieved when her mum died.
Experiencing low mood or depression at times is quite common both for people with MS and family members. 

Sometimes mood changes may be comparatively mild: Anthony said that MS ‘can really get both of us down;’ Eric also said that ‘it gets you down sometimes’ because ‘the demands are a bit heavy.’ Morris said, ‘It’s very emotional, but you just keep going’. But depressive moods may go deeper - Anita talked about being in some ‘dark places’-and sometimes people may need medication or other psychiatric help. Dealing with anger towards the person can be hard, as Dave describes. Sometimes he has to leave the room for a few minutes to calm down.
Other people talked about not feeling depressed. Emma said she definitely wasn’t depressed, though she would like some psychological support, and Paul Y also said he doesn’t ‘easily get depressed,’ partly because he tries not to ‘reflect too deeply on things.’ 

People also talked about how they were affected by their relative’s emotions. Alice said her friend was ‘strangely content,’ in a very advanced stage of MS, whereas before he had MS he was more ‘troubled.’ John Z is comforted that his wife, also in an advanced stage of the disease, doesn’t appear to be in distress. However, Anita said she felt ‘MS paralysed me, in a way’, and that she had to absorb or ‘buffer’ all her mother’s own emotions. Episodes of anger, frustration and depression are common experiences, as Tony and Betty described:
Some people had noticed problems with memory and thinking in their relative. Not everyone who has MS will experience this but mild difficulties are common. For example, many people with MS can find it harder to remember information, follow conversations or think things through.

John X, Jeff, Kate, Alice, Kay Z and Chez all talked about their partner or other relative having short-term memory problems. Sometimes the person themselves didn’t think they had a problem. Relatives thought it was important not to blame the person when they forgot things, but to realise it was part of their illness and so keep their frustrations to themselves. Kate said, ‘I’m no saint, and I do think, “For goodness sake, can’t you remember that?” But it’s really not fair to say that to him.’
Other changes included loss of concentration and being less able to cope with information. Eric’s wife finds it difficult to follow conversation if she is with a group of people. In advanced stages of MS some people sometimes behave in ways that can cause embarrassment or discomfort to people around them.
Patience tells people they should try to help her husband, rather than judging him, when his behaviour is ‘challenging.’ 

(Also see ‘Reactions to an MS diagnosis’).

Last reviewed July 2018.
Last updated July 2018.

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