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Shall I tell the children?

When shall I tell people? Especially my teenagers?

My husband thinks that we should wait until after the neurologist appointment.

I have lots of symptoms, GP has diagnosed, but I am pretending to be all ok because I don’t know what type I have.

Neurologist appointment is three months away, will they tell me what type I have then? and is it important to know the type before I tell people?

how do you tell your teenagers without you and them going to pieces?

i keep reading on line to, ‘be careful and don’t rush in to telling people’, but I feel like I am lying.

When I tell one person in work, it will spread. Does it matter if everyone knows?

Any advice welcome, many thanks

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I would prepare your teenagers by letting them know you’re investigating possible causes of whatever symptoms you’re presenting with - I’m sure they’re aware that you’re unwell.

Your GP cannot diagnose MS, only a neuro can do that following all the tests. There are other conditions it may be. Knowing the type of MS will make a difference to the medication you are offered.

Even if it is MS, there’s no need to ‘go to pieces’, you need to be able to answer your children’s questions with facts (as far as possible), not all the horror stories from Dr Google.

Uppermost in my mind at this stage was ‘is it hereditary, will my children get it?’ It’s important to reassure your teens that you won’t have passed it on to them, but their chances of having MS (if it’s confirmed that you do) would have risen a tiny fraction and should they show any symptoms don’t delay in getting it investigated.

As to who else to tell - until you’re diagnosed you don’t have to tell anyone anything. After dx, if you drive you have to tell the DVLA and your car insurance company. If you work it’s up to you if you tell them - and if you do tell HR that it is confidential and you don’t want all and sundry to find out. When you’re ready to let others know that’s up to you.

Take a deep breath and calm down, I can feel the panic in your post. I do understand, I was there exactly two years ago this week. I was admitted to hospital for 6 days so all my family and work colleagues already knew something was amiss, I remember saying over and over “I’m no more ill today (day of dx) that I was yesterday so don’t panic, it’s not helping”. I had to be calm so everyone else was.

Of course I didn’t know anything much about MS at that point :slight_smile:

If waiting three months to see the neuro is unbearable look into going private - not as expensive as you’d imagine and if it is confirmed, they can refer you back to NHS for follow up. Chances are you’ll see the same neuro on both occasions.

Take care of yourself and fingers crossed for your dx

Ang x

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Your gp can only give an opinion. They are not qualified to give a diagnosis of a neurological condition. His suspicions may be incorrect.

You’re going to see the Neuro soon. I would wait until then when you have concrete diagnosis and can answer your family’s questions. No doubt there will be many. They may already be wondering “what’s going on”, so you could maybe casually mention that some tests are being done and that ms is being considered but reassure them it isn’t something life threatening! Include them in discussions and be honest with them. Don’t underestimate them or their maturity. Tell them you’ll tell them more when you know more.

If it is ms, there are many types and one size does not fit all. Depending on type, there are drugs available that can keep progression at bay. It can be life changing but isn’t life threatening. We on the forum are all here to tell the tale.

Aged 55, I was diagnosed two years ago, very suddenly after virtually no symptoms. Ending up in a&e and admitted for a week, I told my adult children, opening the conversation by explaining I wasn’t dying!, but I have ms. Include them and answer their questions honestly. If it’s something you can’t answer because you don’t know, then tell them that too. You don’t want them feeling they need to read Dr Google for answers. Best of luck. :slight_smile:

get one of the booklets from this site (under publications).

i sent for the RRMS one (hoping this is what i had).

it is very clearly written giving facts with no scare stories.

hubby was told the same day as me.

my sons told the day after.

youngest was 20 and very calm.

he is very interested in science so loved the booklet.

eldest was 22 and on his way back from new zealand after travelling for 2 years.

he is an electrician so was fascinated by the electrical aspect of ms.

i had loads of lovely hugs.

in short, send for the free booklets to help you tell people.

carole x

I understand your predicament,

I was diagnosed a couple of months ago (by neuro- gp cannot diagnose this)

my daughter is 11, we watch hollyoaks together (Nancy on hollyoaks has ms) and she said to me one day- mum is that what you’ve got? You are just like Nancy!

Clever girl!

Since then I’ve told her I’m having tests, I’ve told her I’ve started medication to see if it helps me feel better and I’m gradually getting her used to it.

You know you’re children best, if you think they can handle it, let them know what you’re being investigated for.

noone NEEDS to know. I’ve told a couple of friends and close family. I want to get my head totally straight before I share my health with people who don’t really need to know. It’s entirely up to you.

I feel that it’s hard at first- you’re looking for answers that can’t be told

but remember- wait and see what your neurologist has to say first

ive found that calling them and getting your name out there helps- maybe you could be added to a last minute cancellation list?

All good, solid advice above.

I can only repeat; YOUR GP IS NOT QUALIFIED TO GIVE YOU A DIAGNOSIS OF MS.

Best wishes,

Anthony

I told my daughter about 6 months later when I got hold of a leaflet designed for children. I told her I had got it, that she should not worry but could ask me anything about it whenever she wanted to. She was 11 years old

hiya

my kids were between 2 and 12 when i was diagnosed. i was on my own with 4 of them. at the time i had very family nearby-different now.

from the start i told them all-the younger 2 didnt understand of course. fast forward to now-the younger 2 have never known any dirrefent-mum is in a chair and forgets alot of things! the eldest 2 can recall when i was fit and able but as young adults they are aware that we are all unique!

i am now a gran and my 3 grand daughters have never known any different and havent started asking questions yet.

my niece and nephew (7 and 11) now that they are nearby are full of questions. we cant educate the world (easily) but a couple at a time is very doable. they often say-oh no dropped kerb here for you aunt E!

you know your children-you will do the right thing!

ellie

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Thank you Ang. You are right, I am panicking I am so tired, all of the time and the pins and needles are weird. The pain in my back means that I have had time off work and I feel like people will judge that I am slacking ( I have always been a hard worker). I am just working out what order to tell people but your advice to not panic is good advice.

PS. You should be an online counsellor…you identified my panic in a written post on a forum, you are a genius!

Glad to help! Although being a counsellor would be bottom of my list of preferences for a career. i think that takes a special kind of person.

Just wanted to say I’m sure the people who know you won’t think you’re slacking. Anyone else, s*d them, who cares what they think. Tell those you want to tell, when you chose to tell them.

Back pain and fatigue combined are really dreadful so you must rest when you need to. I find a quick lie down for 10 minutes helps. Accept any help on offer so you don’t get over tired and keep popping back on to the forum as there are many knowledgeable and lovely people here who are always willing to add their two penneth worth. And with regards to housework, leave it, it’ll still be there tomorrow.

x