I have my brothers daughters naming ceremony in 3 weeks time. My mothers side of the family will be there, her brothers and sisters, my cousins. I was fairly recently diagnosed. My mum keeps telling me they all want to know what has been wrong with me. I know at this event they are going to be questioning me. I don’t want people to feel sorry for me, I don’t want people to tell me ‘they know someone who knows someone with MS, so they can help me’. I’m not sure what to say to my relatives when they start the questioning. Any advice please… may be you can remember back and what you said to family like this… thanks xx
Each of us will have differing opinions on this difficult decision. Personally, after confirmed diagnoses I felt better letting family & friends know from the off, as my foot drop and stability was a bit of a give away that there was something wrong with me. The support I received was quite surprising, just blank out those that can’t comprehend what’s going on. Just take your time and tell the family when you’re ready to and on your terms. Good luck and I hope you enjoy the event. Paul
Hi Helibon, maybe an idea to decide on one member of the family you know can be trusted to handle the information with care prior to the ceremony & likely to talk to the others in the next couple of weeks explaining that you don’t want to be compared or questioned at the ceremony as you need time to digest your diagnosis. No matter what you prepare though there’s always someone who will try!!
You could leave it till the day, be firm and polite saying what you don’t want to hear, give them the basics, explain one size glove doesn’t fit all with MS.
When anyone tells me they know someone with M.S and how well , or bad they are doing I say oh very sad /good, what type of MS do they have, i say there are 4 different types this usually shuts them up, unless they understand more about M.S then these people are worth there weight in gold and will respect your wishes.
The majority now have internet i direct them to the M.S sites if they are keen on knowing more instead of exhausting me.
Pauline
What a brilliant answer! If they don’t know (and it’s unlikely that they will) It immediately exposes their lack of knowledge about MS and puts whatever pearls of wisdom they might have from Aunty Betty’s next door neighbour into context without you ever being rude or dismissive. I’m going to use it – often.
Jane
Hi,
I sent an email out to all my friends and explained everything. Meant that when I saw them I didn’t have to go into detail. Got lots of lovely messages back and made it so much easier when I saw people.
You could email your relatives and explain you have MS and a few details. You could say that you don’t want to discuss it at the naming ceremony as the day is for the little girl and you don’t want to distract anyone from the happy event.
People always say to me ‘I know someone who is good/bad with MS.’ I always say MS is quite common and every person is different.
Hope the day goes well and you have a wonderful time.
Jen x
Hiya
I was going to say the same as Jen. Maybe e-mail them all or ring one or two of them and ask them to pass the info on. Say that you’re happy to answer any questions they have either by e-mail or phone but you’d rather not have to talk about it at the naming ceremony and the attention should be on the children, not you, that day. You can also say that you’re still getting used to what having MS means to you and you don’t want it to be the only thing people talk about with you, you are still interested in them and what they’ve been doing.
That way they and you will have the opportunity to get ‘you MS’ out of the way and be able to enjoy the day.
Sue
x
I wouldn’t do the whole email thing cause then its almost like you are making an important announcement. But then it depends on how your family works.
Personally if anyone asks then I would tell them it was MS but that you didn’t want to go into the details cause the day was about your brother and his daughter. Believe me, hte moment you tell one or two people, it will quickly get round the rest.
The alternative is to say to your mum and the family that already know, that you don’t want it mentioned and just say you have not been diagnosed yet.
I hope you enjoy your day, however it goes.
JBK xx
Hello Helebon
Once I told close family and friends, who were very understanding, I put a message up on facebook with a link to this website.
Is it possible your mum can let them know in advance?
The answer I give to people, when they ask me about my MS, depends on the person asking. If I feel they are really interested, then I am happy to speak about it. With some people I may just give a brief response and make it clear I’ve no wish to discuss it.
I hope people don’t waste their time feeling sorry for me, I love an excuse to get dressed up and go out. Hold your head up and look confident…no one would dare feel sorry for you lol.
I hope you have a lovely day and enjoy being with your family
Take care
Noreen xx
Thank you your advice has been helpful… I told my parents this afternoon I would rather not tell anyone (mothers family) until this special day is over. I said I do not want to be getting upset on this day and having to go outside the venue if I get upset. I said I would prefer to keep quiet on the diagnosis until after this day and I don’t want any attention on me as it should be on my niece.They were understanding of this and I mentioned these ideas came from you lovely people. My friends I will tell them one by one as I see them.
The day following my diagnosis I had to attend my nieces christening followed by the big happy family party, as I was unable to mention MS without bawling I told no one til after the event. My husband and I had a good but long day…if you can wait do, say you still don’t know what is up, you don’t want to spend a joyous event talking/answering questions about your MS or stealing someone else’s thunder even if you wished that wasn’t so.
[quote=“Helebon”]
Thank you your advice has been helpful… I told my parents this afternoon I would rather not tell anyone (mothers family) until this special day is over. I said I do not want to be getting upset on this day and having to go outside the venue if I get upset. I said I would prefer to keep quiet on the diagnosis until after this day and I don’t want any attention on me as it should be on my niece.They were understanding of this and I mentioned these ideas came from you lovely people. My friends I will tell them one by one as I see them.
[/quote] I think this sounds very sensible. I hope that the day goes well. Alison
But why do you feel the need to tell anyone?
Well the week before my first relapse I left my husband great timing my whole right side stopped working as I’ve said before but the nhs said it was stress so my ex family thought I was a nutter. Fast forward to diagnosis in nov next big relapse eye muscles didn’t work my walking was all over the place and wearing an eye patch a give away. So I told my ex by text as he is the kids dad. Though my parents had to deal with them while I was in hospital. Anyway I get a text minutes after from ex mum saying sorry to hear or your diagnosis at least now they can manage ur symptoms. I was still in shock and put back at least the hospital apologised and said in not stressed or crazy I’m ill. What I should have put was they don’t hand out muscles or nerves on the nhs. Message goes 2 minutes later what type do you have. Google had been going fast. I reply I don’t know just have got told. Ping 2 mins later his sister (who had been my best friend) sends another message the grapevine works fast. So I sent a message to ex saying was that question from you or family knowing what the answer was. It had his mum written all over it. So I told ex I don’t mind people knowing but since I’m newly dx can you please not tell anyone else. So I was still debating who I was going to tell. But I knew I couldn’t hide it was hard explaining why my baby lives at my parents. So I told a few close friends, phoned a few ‘older’ friend who were more mature ended up sobbing down the phone to them. Which helped me turn a corner. Then my mum goes to th hairdressers. And the hairdresser says how’s Emma coping with her dx. Mums like how do you know that private at the moment. My ex mum had been speaking to am old bf of mines mum in the hairdresser saying how devastated they all were!!! My mum was furious. I his the whole of last summer thinking I had postnatal depression and that my body would work again. So just the other day I decided to take back control of my life and I posted a notice on fb. As Apparantly I shouldn’t have told the kids I’m ill and questioned things like letting my son come in to my bed for a cuddle etc. So I just stayed that my kids mean the world to me and know one had the right to judge our decisions. I never tell my son how sore I am and said my neurologist had advised me to tell him etc etc so publicly came out. Suppose quite the scandal for a little town who know me as a champion dancer. But I had some really ace support. Since I did it I’ve joined a parent/toddler group whete people now know the truth so when I’m struggling I accept their help and not embarrassed. So what you feel is right for you and your family.for me it was just knowing when it felt right for me. When I wasn’t going to burst into tears when I told someone or it was mentioned. Hope you have an amazing day. And ms is kind to you. And apologies for the long post x
Sorry for posting twice went from wifi to 3G
My husband grew up in Fraserburgh emfraserburgh. How on earth did you imagine that your news wouldn’t spread like wildfire. Lol
Haha well I hid from the world ginsozzled and my family have a nice house with plenty of garden so I was ensconced in my own private sanctuary lol. I would walk the dog with dad at 6.30 in the morning. I was only sleeping 2 hours a night lol so never saw a soul They thought I just couldn’t cope and was a nutter lol after the break up. Now I’m not so embarrassed and was I was dx then it spread lol. So ur husband got a lucky escape did he? Lol Em x