How do I tell DS?

[RoseyOldCrow]

DS (16) is about to be diagnosed with a chronic health condition which will require lifelong management & a complex regime of medications.
At the moment, he experiences one of the major symptoms (sorry, I won't say, it's rare & so potentially outing) but afaik he doesn't know anything about this bigger condition or the other health problems he will experience because of it.
It isn't life limiting, thank God, but has some very sensitive & restrictive symptoms - think infertility & osteoporosis, for example.
So far, high level tests have shown major indicators of this condition, it's "just" a case or working the details with a specialist clinical team.
We will have many more procedures & consultations over the next few months, I know he will be stressed about missing school in addition to the condition itself.

I wouldn't dream of lying to him over this or even hiding the range of possible symptoms; he will be able to discover so much information online, & of course I would never lie to my DCs anyway.

Does anyone have any advice on what words to use to break the news to him, please?
Has anyone had to do anything similar for a teen?
What interactions did you have with school?
Help!

I have experience of breaking bad news to little ones not teenagers so I'm not sure what is age appropriate.

When I was told about my chronic condition as a young adult it was very overwhelming as I was asked to make some decisions the same day and it was just too much. I did but I was awful. It couldn't be helped but the medical team were also quite rushed.

So I'd say talk a bit, invite questions, reassure what you can, and repeat over a period of time.

Your 16 year old son has been having multiple medical appointments and tests yet has no idea why?

He must know. He's 16!

I don't know if this is helpful or not but when mine got his diagnosis, we worked out a way to deal with each symptom as and when they arose.

So if X happens we can deal with it by getting you X to help, we went through from the smaller things like different cutlery to what kind of wheelchair.

We managed to arrange that the occupational therapists would see him in school to limit the amount of time off school needed and I tried to get as many appointments arranged for half terms or after school times as I could.

We arranged that instead of being sent home by the school nurse he could rest in the nurses office and go back to class after, if well enough, instead of just being sent home as the only option.

The nurse also holds his different pain relief and different "aids" should they be needed.

My dd is 11 and is being tested for lupus, it’s almost definite she has it.
She’s understood the whole process every step of the way, we’ve sat and talked about it at length. Tbh I’m surprised at 16 he doesn’t know what he’s being tested for, have the doctors not said in front of him what they think it could be? Every time dd has seen the consultant they have discussed possibilities ‘it could be cfs, it could be lupus’ etc and they have actually explained this to dd in ways she can understand too... and offered counselling to her to help her come to terms with diagnosis.
Couldn’t be that your ds does actually know but is deciding not to discuss it with you? Either because he’s scared or sparing your feelings?
I honestly think you should just sit down and have an informal chat - explain what the tests are for and let him lead with any questions he may have.

Unless of course if he isn’t NT and may have trouble understanding? That would make things a bit different in how you would broach it.

Unless there’s another difficulty that you haven’t revealed, I’d be most surprised if your ds doesn’t already have a pretty good idea of what’s going on.
Has nobody from the medical staff that you’ve seen said “We are testing for x, because we think it might be y, or to eliminate the possibility of it being z” to your son?
I’d expect at his age, that even if you were present, that they’d direct most of their conversation directly to him. No?
It’s bound to be very difficult for him, and you, and I’m sorry you’ve got such bad news.

The tests to date have been regarding his current (rare) condition. He is not stupid!
It has not been technically possible to test for the overarching condition until he has reached this age.
Just because a person has the rare condition does not mean they have the (extremely rare) overarching one.

Thank you pp for your helpful & personal comments, I appreciate them 💐

Sorry, I wasn’t insinuating he was stupid, far from it! Apologies if it came across that way.
So that makes more sense, he knows of one rare condition but he doesn’t realise he has the overarching even rarer one?
Must be very difficult for you, I think just sitting down and having a really light conversation with him, I wouldnt bombard him with every possible future complication but leave it open so that he can ask any questions or look into it further when he is ready.
Good luck.

Thanks @infinitygauntlet
I will do my best to be gentle, open & available for him.
It's so sad that our babies get ill, they simply don't deserve anything interfering with the simple pleasures of childhood & enjoying growing up in. to the devoted parents who give up their own lives to care for them.

It’s definitely hard for us to watch them go through it, I’m amazed by my dds strength though and how much she puts up with, I can imagine you’ll be just as proud of your ds

I'm imagining it's between juvenile diabetes & NF2.

Tell him straight what it is & how it will probably affect him & what he is supposed to do about it daily. In the calmest "We can manage this" tone you can muster.

Be ready for him to have a rebellious phase in future & not take his meds or follow advice & say "Sod This" about living with the condition.

Rosey that's really difficult. I was taken aback as my DC has been kept informed all through their tests etc by HCPs never mind his DF and i.

Thanks Penfold007.
(I love your name, suspect we are of similar age & cultural influence!)

Nope, nothing to do with diabetes (or whatever the other is!)

I keep forgetting for a while & then remembering, and feel guilty because I forgot & because he doesn't know what's around the corner.

Would your sons doctors be able to help you with how to go about telling him ? I am sure, as it's very rare and will affect him for his whole life, the doctors will realise the importance of him receiving the news in the best possible way at his age.

I hope your son is ok.

My DS has a chronic illness, was diagnosed when he was 11 and is now 19. He has had several periods of very poor health but has never wanted to discuss the details of his illness, never wanted to know the long term effects of his treatment, doesn't want to think about his future health. He wants to just take each day as it comes and we have to respect that.

It's helpful to chat about how he might answer questions from friends and to think about what you say to siblings. It's also important to know that he might seem ok with the diagnosis initially but the reality might sink in later.

The best advice from our psychologist was to make it clear to DS that when he wanted to talk we were there and he could ask us anything (even tough questions that you don't want to face). It's so hard because you are going through this too but not being completely honest will just catch up with you later.

Good luck.

Quick update after GP appt (DS not present) -
Urgent referral initiated to Paediatric consultant, advice given on discussing next steps with DS. Feel reassured that we can control this together.
Thanks for your comments & support