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How do you get the right help when you've only just been diagnosed with MS?

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Telling your nearest and dearest that you’ve just been diagnosed with MS can be tough. People’s reactions will vary from being stunned into a very long silence to wanting to wrap you in cotton wool and do everything for you.

Some people will offer all sorts of help. Some of it will be very welcome. Some of it might be useful but there are other things that would be much more appropriate. Most of it will not be needed now but could be helpful if MS has more impact in the future. Some of it could be rather upsetting as it may automatically assume that you will need high levels of help before long.

Imagine this

Julie has just been diagnosed with MS. She didn’t really know what it was until a few weeks ago. MS is already having an impact on her daily life and she could really use some help, although she doesn’t want to admit it. Her family seem to have retreated in silence.

Somewhere else, John has been diagnosed with MS. He is feeling well and has no intention of changing the way he lives just because of his diagnosis. He is determined to be independent but his family are insisting on helping whether or not he wants it or needs it.

What should they say?

Thinking back to when you (or a loved one) were diagnosed with MS, what would you have liked to happen?

What is your take on these questions:

  • How should these newly diagnosed individuals respond to offers of help?
  • How can they get the help they need without offending people who are trying to do the right thing but offering the wrong thing?
  • How can they say “no” or “not right now” or “could you do something else for me”?
  • What if people don’t offer but you need some help? What’s the best way to ask?

Please tell us using the form below or email infoteam@mstrust.org.uk. It will help us prepare our new resources for people who are newly diagnosed with MS.

Thank you. We appreciate your help.

Jane, Information Officer