Multiple Sclerosis: friends & family experiences

Reactions to an MS diagnosis

Waiting for a diagnosis, sometimes over many months or years, and wondering what could be wrong, was a worrying time for everyone involved. For some people finally getting a diagnosis of Multiple Sclerosis (MS) came as a shock. But it was also a relief, especially when a ‘worse’ diagnosis had been feared. 
Stella and her partner were both afraid that he might have cancer, though they didn’t speak about their fears. Sarah Z had worried about ‘the dreaded Motor Neurone’ so, again, hearing it was MS was better news than she had feared. Looking up symptoms on the internet had made Karl think about motor neurone disease, too:
Even so, people we spoke to used strong, sometimes very emotional, language to describe their reactions when a relative or friend was diagnosed with MS. Commonly people spoke about being surprised and shocked. Robin was ‘thunderstruck;’ for Anthony and his wife it was ‘a body blow,’ and for Kay Z and Ann it was ‘a bolt out of the blue.’ It was as though ‘time stopped,’ when Christine’s boyfriend told her he had MS. Often people did not know much about the condition and sometimes assumed the impact would be worse than it has been.
The shock of hearing that a close relative or friend had MS could cause people to feel numb. Sometimes people felt they could not or did not want to believe it. Other times the diagnosis led people to reappraise their life in relation to the life of the person with MS.
Some people we spoke to had different reactions from the person with MS. For Ray, the diagnosis was ‘a big shock,’ but for his wife it was ‘a blessing in disguise,’ because it explained her symptoms and took away the feeling that she was going mad. Different reactions could be affected by peoples’ previous knowledge or experience of the illness. Kay Z said that the diagnosis, ‘Hit us like a bolt from the blue,’ and that she learned the meaning of the words ‘your blood runs cold.’ But her husband was ‘less panicky’ than she was because he didn’t know anything about MS, whereas she had encountered it before and saw it as ‘very, very bleak.’ It is important to remember that MS can affect people in very different ways and it can be hard to predict what will happen to each individual.
Even though there is no cure for MS, having a diagnosis was seen by some of the people we spoke to as a good thing because it helped to explain symptoms and gave you more chance to try and take some control of your life. For Ray, and his wife, the diagnosis gave you ‘something to pin the symptoms on’. John talked about the power of being able to ‘name your devil.’ For Paul Z and his wife, the diagnosis gave the opportunity of working with health professionals to ‘put a plan in place, to help us.’ For Anthony and his wife it was important to ‘start to get our heads round it,’ to research the illness and begin a process of acceptance. 

Last reviewed July 2018.
Last updated July 2018.
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