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How do you explain to close friends...

Hi,

maybe this topic has already been discussed but I’m just wondering what you tell your closest friends when you may or may not have ms and maybe if you even have ms it will take years to actually diagnose but still struggling with symptoms.

It’s so difficult not having a legit reason as to why you’re feeling the way you are…sometimes I wish my GP never had asked me the question “if I have anyone with ms in my family”…He asked me this about a year ago and here I am two mri and one LP later and no definite diagnosis but a scheduled mri in March again…so what to tell your friends? I’ve told some of my friends but some of them don’t seem to understand, still, because I used to be the life of the party but in the recent year or so that’s definitely not the case. I want to go to bed early and get togethers can actually be a “struggle” to get through.

It sounds as if I’m in a really bad state and really I’m not if I compare to what state I was in during spring and beginning of summer and in comparison to alot of the other stories on here I maybe should shut up…just getting to me mentally at this stage and I try not to get to consumed , but still it’s there lingering along and when i kind of “forget” som symptom just appears…

Again what do you tell your friends when they still don’t seem to understand? Do you pretend all is well, because honestly they can’t see how I feel on the outside anyhow, or do I tell them that I’m undergoing observation for ms but the neurologist seems to think I’m to well to have ms so most probably I don’t have ms or what do I say??? I want to get together with friends and I want to do all things as usual which I can but I don’t have the energy to ever feel like doing anything and that’s really depressing…

If you got this far, thanks for reading/listening.<3

BTW just to clarify it’s not that I really don’t want to do things it’s just that I never know my energylevel beforehand and that’s kind of an obstacle to get passed as my job is pretty demanding I seem to want to spend my sparetime at home…

Hiya PG,

It’s a difficult one as it depends on the mindset of your friends. All I can say really is you must tell your friends; you don’t want Chinese whisper’s and if your mobility is affected one day; some lovely person saying; “There she goes; pissed again.”

A good friend is someone who will dive into that conversation and tell them politely to go and have sex far away.

Don’t elaborate but tell it like it is; if tiredness is your main problem tell them. A good friend will understand; help and excuses; if needed for you.

If it is MS your life will change. Don’t fight the changes because MS will win, but alter what you do to get around it. Like if you’re tired; rest; it is only you that will suffer if not.

Good luck; with things that are happening you limbo landers will be wondering; I reckon in 5 years; what all this MS fuss is about.

George

Hi

It sounds as though not only are you bothered about how/what to tell friends, but are also struggling with what to feel about things yourself.

In terms of what to tell people and how, there’s some guidance on the MS Trust website about how to tell people about an MS diagnosis. I know you’re not diagnosed, but some of the information may still be quite useful for you in your situation. Have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis/telling-people

In general, I remember telling my boss at work that it was looking like I might have MS, and he just looked a bit embarrassed and said, ‘oh I’m sure you don’t’. That is likely to be the reaction you get from quite a lot of people, if you say I’m being tested for MS, they’ll think it helps to deny the reality of the situation. So you may be better off saying you’ve got symptoms that could have a neurological cause, and that it’s being tested over the next few months.

By talking about symptoms rather than the possible diagnosis, you’ll maybe get the message across better. And it will explain why you don’t feel much like going out and partying.

In terms of how you feel generally, I think it’s important that you recognise that you are feeling quite low in spirits, maybe a bit depressed, you could see your doctor about your general concerns, your fatigue levels and depressive feelings. But chances are you won’t!! Don’t worry about it, it’s very normal to feel quite down about the limbo period your stuck in.

Don’t worry about comparing yourself to some of us on here. Just because you don’t have disability, it doesn’t make your fears and concerns any less valid. I don’t compare myself to those of you who are able bodied, so you don’t need to be worried about our feelings.

And you should do just as much or as little as you feel like doing. If at the present time all you want to do is stay home and rest, then do that.

Sue

Thanks George and Sue! It’s so very true what you’re telling me and I’m listening. Sue, I’ll try the symptoms because of neurological cause -that sounds better as you say some people don’t know how to react when they hear the ms word and when they kind of deny it you feel a bit stupid… and yes I feel a bit down at times’ mostly because I feel alone with My thoughts but thank god I found My way here! to be able to share and care with you all is a real good way to make a troubled mind less troubled;)

<3 Penny

hi penny

sue and george have covered the main points.

i would add that amongst your group of friends there will be one or two gentler, more empathetic types and you will gravitate to them.

maybe arrange to meet up for a coffee now and again.

one friend said “oh the fatigue is awful, my dad had it with is cancer”, we ended up hugging.

you will find your way through this tricky time.

carole x