This week has not been too bad apart from the crazy self moving finger, and some pain, but I know with ladies time coming up its gonna get bad again, and I have made a promise to myself to tell my Mum in the next 2 weeks,its an official deadline for me. Trouble is,when things are ok (which is fab), i go back into denial. i had arranged to go to a local support group yesterday that i was invited to, but i was so scared, i felt like i was a fake cos i wasnt dx’d (even tho they said they have people who aren’t dx’d), and also how i would react talking out loud to a bunch of people who may well be feeling exactly the same.
Does anyone have any tips as to how i can approach this? Obviously i have my secret symptom tracker, but i don’t wanna just wave that under her nose. I think i really need to do this but just dont know where to start, 2 years of near complete secrecy has made everything such a mess - help???
I thought your mum knew you were being investigated…for something…and had even been to the doctor with you - or am I getting completely confused with another poster?
If your mum already knows about the medical investigation, then in what sense is it “secret”? She must know you have symptoms, and have some idea what they are, otherwise why would you need to go to the doctor? She can’t think you’re going about nothing?
Do you really need to detail every symptom for her? I would tell my family if something major happened, that had never happened before - e.g. losing sight. But I don’t update them with every symptom that I live with day-to-day. Not because it’s secret, but because I don’t update them with lots of other stuff that happens all the time, either - like every time I wash my hair or make a cup of tea (I was going to say something different…)
My mum knows I have MS, and before that, she knew I was having some neurological problems, and, when the time came, that MS was likely. She knows the symptoms in broad terms. She also knows my periods made it worse, and that I went on the pill for that reason. But I’ve never updated her with every single thing - dates, frequency, exact part of the body, etc. etc. Why would she need to know all that?
The other thing is that people who’ve never had them can’t readily understand all the symptoms anyway. So keep it simple for them. “Bits of me get numb or tingly”, or “I have problems with my balance” is a lot easier than trying to present specific details of every time it’s ever happened.
My mum knew i went to the doctor for my “funny moments” which are probably not neurological but there is still no explanation for these. I don’t want to tell her all the in’s and out’s, but since things are getting worse and not better, i feel i need to tell her the stuff she can’t see, so that its not a secret when I have to go back to the doctor and say the vit d isnt really working.
Hi Jules, fear is a powerful motivator or it can be a powerful unmotivator and it often leads to not doing something. Its often easier to face up to fear , concerns and problems than we first think. I’m sure there have been times in your life when you look back and say “that was’nt so hard” and you feel good because you’ve overcame your reservation. Possibly this is wphats needed but only you know when the time is right. I’ve been telling my mum that I have a bit of nerve damage and thats why I’ve been having tests and things so she knows I have health problems and need a walking aid. I havent mentioned ms yet that will come if dx’d. The main thing is she knows I have issues an she’ s being supportive. The support group is a very similar issue, I’m sure they wont bite and they re probably very informal and you won’t be asked for any personal information that your not happy to give. I’ve thought about going to my local support group and like you the undx thing pops up so I put back into the ‘pending’ tray of my mind , sigh and think hmmmm. Carpe Diem as they say, but the day is for you decide I hope this has made things clearer for you Jules and good luck with your decisions. Frank.
Why not just tell her the same as you’ve said here? That you’re not convinced the Vitamin D is working, and you feel things have got worse, rather than improved. This is more than enough to explain why you feel the need to go back to the doctor. In fact, as your mum, she’d probably be urging you to, if you weren’t already talking about going anyway.
It’s up to you how much else you tell her. If you don’t feel relaxed about telling her, then why have you got to? Tell as much detail as you feel comfortable with. If that’s not all of it, then don’t tell all of it. If, on the other hand, you want to tell, then what’s stopping you? She already knows everything is not OK, otherwise you wouldn’t be having unexplained “funny moments”, or be seeing the doctor in the first place. So it doesn’t seem likely it would come as a complete shock for you to say things still aren’t right.
If she had no idea at all you’d been to the doctor about anything, would be slightly different.
Hello, I’m in a similar situation with my mum. I have kept all the Neuro symptoms from her though. This makes me sad but I know if I did tell her everything she would pass it off as nothing and that would hurt, I need support. I have my first Neuro appt on Monday and she has no idea. I’ve told my sister and she agreed that mum wouldn’t deal with it well. I have no idea what is round the corner but she will know when I have news to give. If its treatable then I can sort it without worrying her. I am petrified about Monday, even more so now I’ve got to go on my own! Sorry, not much help, you need to do what is best and what feels best for you. I fully understand, my mum knows I’ve had problems with fatigue for years and years but I have kept the Neuro stuff from her since it started. Sam x
Hi Sam, Thanks for your reply,i’m sorry you are in a similar situation.But its nice to know there is someone who understands, good luck with your appointment!! ((hugs to you)) Jules x
If you decide to tell your mum anything then go with your gut instinct and only tell her with what you’re happy with her knowing. Maybe telling her you’re going back to the docs could be the opening to the conversation? Then from there maybe mention that the docs think your symptoms could be neurological but that you’re still under investigation.
As Tina said you don’t have to confide in her about everything. Who does? I certainly don’t, not with my parents or anyone else!
My parents both knew from the start that I was seeing a neurologist and going through diagnostic tests, as did my employer and work colleagues. I’d already been in the job for eighteen months or so at the time and they’d noticed that something was amiss anyway - so I was upfront with them and told them. They were brilliant - as were my parents. They all still are in fact.
When I was diagnosed my parents decided they wanted to know as much about it as they could so I ordered some material for them to read up on. To this day they still keep up to date with research and stuff. My employers looked into ms off their own back - I know, because they both seem very well informed and it helps - not only so they can get a better understanding but also so they can better support me in my job. It also means we can talk about it with ease.
From the off I asked everyone to laugh with me and not at me when I have my ‘funny moments’. It helps to take the edge off the seriousness of the situation, but I realise not everyone can laugh about it - there are times when I can’t.
Do what you need and want to do Jules - it’s the only way. By opening up to someone, be it your mum, a friend or plucking up the courage to visit your local group, it’s all extra support for you but doing so doesn’t mean that you have to bare your soul to them.
Is there no one that can go with you to your appt? Your sister or a friend perhaps?
It’s always scary when we don’t know what to expect - it’s the fear of the unknown. I know it’s really hard but try to think of it as another step closer to finding out what’s causing you to feel the way you do. You’ve already started the ball rolling by seeing your GP and being referred to a neuro. That first step is always the hardest one to take.
Don’t forget to take some notes with you to your appt because it’s so easy to forget things when you’re actually in there. Jot down a concise but brief list of your worst and more troublesome symptoms and give a copy of it to your neuro so it can go on your file. He’ll examine you, ask you about your medical history and most likely order some blood tests to start with.
I agree Jules, baring the soul isn’t for me either.
Have you considered ordering some information booklets from this site? I know you’ve not been dx yet but there’s one in particular - I think it’s called ‘Explaining MS’ - which may help you find a way of telling your mum about some of your symptoms and how they affect you. It might be worth a shot?
Hiya, I have ordered a couple, one called what is MS and some which i thought might help me. Just walking back from town, my left leg started hurting and limping again, and i said to mum as we walked " my legs hurting again" sorta joking moany, and she was hardly listening, just went “yeah” and moved onto something else. that is one symptom in the most simple form and she isnt even bothered to be fair, my sister is waiting on some test results too, so im not top priority, but even before that she wasn’t massively bothered. i give up!!
Hi Jules, thats quite a reaction you got or didnt get- it depends how you evaluated her respose. Maybe she only appears to be uninterested as a form of denial because its something she cant deal with. It was a good idea getting the books because one way of adressing the situation being open about and saying look mum this is suspected, I got these so you know whats happening. Sometimes it may be better to be open, then you wont have the added stress which only makes things worse for your symptoms. Lots of things happening there Jules hope you find the answers. Frank.
Your mum may not appear to be listening Jules, but that doesn’t necessarily mean that she’s not taking in what you’re saying. It could be a form of denial particularly as your sister is also waiting on results.
Try leaving the ms books laying around - maybe she’ll look at them in private. Sometimes information in ‘written form’ sinks in a bit better. If that’s the case then it’ll give your mum more of an idea of what you’re going through.
that is true, im not very good at reading people. i tend to hide MS stuff away cos i dont want her thinking im being a hypochondriac, but mum’s are mum’s, they will always get to the bottom of something! lol
I’ve got to say, I do think it’s premature to be introducing MS literature to the family, IF, so far, nobody in the medical profession has suggested this. I’m not saying you don’t have MS, but I’m not clear, at the moment, whether this is an official line of investigation, or something only you yourself suspect. If it’s not even been mentioned by the medics, than I’m afraid I think ordering MS literature, and leaving it “lying around” will cause needless worry. You need something more concrete to go on, before you start introducing your family to the idea you may have MS. You’ve admitted yourself some aspects don’t fit - for example that your “funny moments” are not thought to be neurological.
If I’ve got it wrong, and you have been told MS is indeed a possibility, then it’s reasonable to start paving the way for a possible diagnosis. But personally, I wouldn’t start bandying about the names of serious illnesses, unless your doctors have been clear that’s what they’re looking at. If your mum finds MS blurb at home, she’s going to assume that came from your doctors, when it might not be that at all. I think keeping family in the picture is great, but priming them to expect MS, if nobody qualified has actually said that - Sorry, not great.
i have no plans to prime them to expect MS at all, all i asked was if there was a good way of approaching family and telling them of symptoms because i feel i now need support and symptoms are now showing on the outside as it were. im sorry if i caused offence.
Just to clarify things Tina, I was referring to Jules maybe using one of the books for help in finding a way to explain to her mum how her symptoms affect her - not to tell her or lead her mum to think she has ms. Crossed wires there I think.
I don’t think anyone has been offended, so don’t worry. Tina was right to say not to let your mum think you do have ms when you’ve not been diagnosed. All I was suggesting was that the books may help you find a way to try and explain to her how your symptoms affect you that’s all.
Hopefully you’ll find a way to broach the subject of your health with her - let us know how you get on.
to be fair, my sister is waiting on some test results too, so im not top priority, but even before that she wasn’t massively bothered. i give up!!