How to tell my teens about my diagnosis ahead of lifestyle changes

[WordsearchKween]

Does anyone have advice on this.

I learnt recently I have an incurable autoimmune condition resulting in permanent hair loss.

I have decided it's probably best to tell my children (teenagers) over the half term school break for minimum impact on their studies, gives them time to process too. I need to change my whole outlook and approach to self care & lifestyle so putting this off will be confusing & unsettling for them if I start prioritising things differently without context.

Ideally I'd wait until the summer hols but it feels too long off to implement changes plus my emotions are very up/down right now as I'm processing this which again they'd benefit from understanding especially if they caught me on a down/upset moment.

Does anyone have any advice on how to approach this sort of conversation?

Is it better at home or out somewhere (not sure where) so there's no association with the place where they learned going forward?

Is it better to be as brief as possible then be led by them if they want to ask questions? Or give them more info incase they feel unable to ask?

Is it harmful if they see I'm sad / scared upset? Or more harmful to present such news as if I'm not feeling the things I am feeling?

Any other advice much appreciated. It's just me & the teens, I am literally their only family member so is big very scary news in our lives with having no safety net of any kind or support of any type.

Thank you for any shared experiences or perspectives.

Do you mean you have a form of permanent alopecia?
Or something more serious and life-limiting.

i’m so sorry you are going through this, i would be devastated to lose my hair. however with that being said, from the title and the talk of impacting studies, i was expecting cancer or some sort of life limiting illness. i’ve heard annabelleswigs.co.uk are decent quality if your budget isn’t on your side.

Alopecia or something life limiting/more serious,

My DH has alopecia universalist and developed it when our eldest was a baby. His mother also has the condition and lost her hair fully after children.

Our kids never knew dad with hair so for them this is entirely normal. Weirdly for me, when he was losing it, I didn’t feel anything negative about it. I expected to, but I didn’t. It looked better once he shaved it off.

He remembers being a bit embarrassed by his mum’s (badly tattoo’d) eyebrows but as she’s a wig wearing most people don’t know. I didn’t realise when I first met her either.

I know my DH felt uncomfortable at first when meeting people we knew he’d not seen for a while. However, when they know they have just carried on as before.

Anyway, to your question. I wouldn’t make a big deal out of it. They are teenagers so mention your diagnosis, perhaps inform them if you’re going to cover your head if you want. Let them ask questions, perhaps look at alopecia UK together if they ask things you don’t know.

Our kids have asked if they are going to loose their hair too one day and we’ve said maybe, but that’s ok, it is what it is.

You need to be more clear as to if you are telling them you are likely to lose your hair but you are otherwise fit and well or if you are telling them you have a life limiting condition?

Is it Frontal Fibrosing Alopecia?

I am really sorry you are going through this but I’m honestly very confused about the level of impact you are expecting this to have on your children. Do you think you might be projecting?

Oh gosh I'm sorry you're on your own dealing with this. I would tell them as soon as possible, and I'd do it at home. At least at home they can retreat to their bedroom for some quiet time.

In all honesty, teenagers are mostly living in their own world, so don't expect a huge reaction from them, they'll just absorb the information and move on I should imagine.

I find some of these comments really horrible. Alopecia may not be 'serious' in some people's eyes but it can be absolutely debilitating to mental health. My DD14 has suffered terribly for 10 years with and to say 'ah well it's not life threatening' is horrendous when there is no cure and my daughter tells me she wants to die.

Fucking vile

I would start brief with the headlines 'I have X condition, this means A, B and C' being very clear on whether this is life limiting or not, progressive, timescales etc.
Then let them ask questions, or not, go off to process or not.
Expect more questions later.

I don't think we are trivialising it. I have permanent alopecia myself, but I'm asking if it is something life-limiting also, because I don't want to waffle on about my hairloss coping strategies if OP is facing an even more serious diagnosis.

I agree a bit with this. I know my MiL really suffered when she first lost her hair as a teen. She thought there was nothing to live for and thought she’d never marry or have children.

i dont think my husband suffered as much partly because he’s grown up with alopecia being normal. I know our kids aren’t ‘scared’ they will lose their hair, it’s more curiosity about whether it will happen to them.

However, I know DH and I talked about this when he tried steroid treatment. It didn’t work or make him feel good. We both questioned the value of the treatment when the condition was not making him unwell or limiting his life expectancy.

I know for some people going through this it’s devastating, but it is really individual. It’s also not wrong to say it’s not life limiting as such.

I'm sorry for your diagnosis, it sounds like a very tough time for you op.

My advice for telling your children is keep it straightforward, simple and answer their questions honestly. Reassure them it's not fatal.

• I have been diagnosed with X. It doesn't mean xyz, but it does mean I'm going to lose my hair and will need ongoing treatment and management.
• I understand this is a lot to take in and you can ask the questions you need to, that's OK.
• The symptoms are...
• I'm going to need to implement life style changes to manage it, which are...
• yes I'm a bit upset about it but that's OK, big diagnoses can always be a lot to get one's head around. It doesn't mean I'm hiding anything from you, I just need a bit of time to get used to it
• these are ways you can help me manage my symptoms or where you'll need to understand I can't do xyz
• I know this is a lot to take in. Do you have any questions?

Is it harmful if they see I'm sad / scared upset? Or more harmful to present such news as if I'm not feeling the things I am feeling

If you're not going to be able to hide your feelings then that's OK, it's OK for them to see healthy emotional responses.

I was diagnosed with MS a few years ago and only told 1 of my children at first as my eldest had mental health issues anyway and my daughter is quite anxious.
my 12yo (at the time) daughter had noticed I need to lie down/nap a lot but it was only actually brought up in conversation when she noticed my MS medication and asked what it was for and so I explained to her what it was and let her read the leaflet and it went better than I expected- it’s the keeping secrets and things feeling “weird” she struggles with, she hates not knowing what’s happening
My grandma was diagnosed with Cancer a few years ago as well and as my son was doing mock exams and my other son resits I tried to keep it from them so as to not stress them but they could tell something was happening and all I did was make myself ill trying to keep it a secret
so I feel as long as you deliver it in a matter of fact but age appropriate way then I would tell them now

also to add I had come to terms with it myself before I told them so I didn’t actually get upset with that conversation
but we did warn school that my daughter had just been told about my health in case she struggled with it