How do you tell people about your diagnosis?

New diagnosis and before diagnosis
1

Hello. After a year of various symptoms (including an initial diagnosis of transverse myelitis last summer) I’ve recently been diagnosed with MS. I’m in the midst of a relapse and day-to-day life is a bit of a struggle. I work full time and have two kids (18 months and 4) and my husband works long hours a long commute away. As i work in a very supportive environment I felt comfortable telling my boss and my immediate co-workers to ease the pressure as I come to terms with my diagnosis and work out what I need to change in my life to make everything a bit easier.

Telling people I’m not emotionally close to but who I work with wasn’t that hard, but I’ve got no sense of how to talk to my loved ones. Obviously my kids are too small to understand. Other than my parents and my husband I just don’t know how to talk to people. Its not that I need to tell everyone now, but I can’t even bring myself to talk to my siblings - i don’t know how to have the conversation. I know that I’ve only just had a diagnosis but I also know my closest friends/family will want to offer support and will probably make my life easier if they knew. Somehow I just can’t find the words. I told one friend as she caught me off-guard when i was a bit emotional but her response of ‘I’m so sorry’ (well meaning I know) made me want to say ‘I’m not dying you know!’.

Any advice on how to handle how best to talk about this from those who have been there would be gratefully received.

2

Hello

The MS Trust have a useful page on this subject: https://www.mstrust.org.uk/about-ms/newly-diagnosed/telling-people as in fact does the MS Society: https://www.mssociety.org.uk/care-and-support/everyday-living/family-and-relationships/telling-people-you-have-ms

There’s no need to rush into telling people. You need to get your own head around the diagnosis first before telling people who will be upset for you and with you. Eventually you’ll find the way to tell your loved ones and will probably at that point be able to reassure them that it’s not going to make a huge change to your life immediately, if at all.

If you were to concentrate on getting sorted with a disease modifying drug (DMD) first, then you’d know that relapses should be reduced in number and severity because of the DMD. Talk to your MS nurse about it, but have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid so you are at least familiar with the names of the various drugs in advance.

Good luck.

Sue