Feel awful but not sure I believe teen about fatiguing illness

[Bananaramarama]

Have a 16yo DD who said about 6 months ago she thinks she has some sort of fatiguing illness. She did have a bad (and relatively unusual) virus about 18 months before that so I figured she could maybe have something post viral after that. She's always been early to bed, early rising and says she wakes up feeling totally unrefreshed. According to her friends with CFS or similar (I'm not sure if diagnosed by medical professional) say they think what she describes sounds like CFS.

She has had a test for iron deficiency and that all checks out as OK.

I am the last person to be sniffy about CFS, my mum has had it for most of her life and I know it is absolutely real and absolutely debilitating. But... I can't see any clear signs of it in DD, and I don't think it's something you can mask. I also can't think of times (I may be wrong) where she has cancelled anything she really wanted to do because of fatigue, and she does a lot of social/extra curricular stuff. She only drops out of things like going somewhere with me, or claims she couldn't get a chore done because she was too fatigued.

I wouldn't say DD is 'attention seeking'; she may be autistic (also waiting for assessment on that). Part of me wonders if she feels a need to relate more with friends who have chronic illnesses/disability.

I don't know what I'm asking here - I feel like I want to talk to her about this honestly but it's hard when we're already not as close as I'd like. At that age when it's all about friends really. But if she really has a fatiguing illness, she should be pacing herself and doing less or else she might suffer total collapse (like my mum did).

So maybe it comes down to just saying 'Look, if you have CFS or similar, you need to do less stuff. Even if you think you are coping. I'm not punishing you, but to not exacerbate it, you need to do less stuff - I'm worried you will totally collapse like grandma, so you have to ration what you do with your time if you are this fatigued'.

Meaning either she has to declare herself better, or give herself more rest that she genuinely needs. Then there's the risk she declares herself better so she can do stuff, and then makes it worse.

OP you seem to be going down a detective route and overthinking it. Why don't you take her to the doctors and see what they say?

I get you OP. She is well to do all the things she wants to do but when it is a chore or something with you then she is fatigued. I would def go to the doctors and if they come up with nothing then your suggestion to restrict activities so she can rest sounds reasonable. Or she can declare herself well.

Glandular fever maybe? I had it when I was 11 and it wiped me out, on and off for 2 years afterwards. I don’t know what CFS is though and would always be sceptical of a teen ‘developing’ the same symptoms as their friends.

She is still waiting on appointments to follow up on some other things - one is, worryingly, memory lapses, and she will be seeing a neurologist next month. Again, we haven't observed this in her and her academic achievement is fine - she claims friends and an ex-partner have said she seemed to forget conversations (although maybe a neurodiverse thing?).

I did the dreaded asking AI thing just now, which was quite interesting - it;s suggestions were

'None of these are diagnoses — just human possibilities that often show up in teenagers.

• Selective fatigue is incredibly common at 17. Teens often push through tiredness for things that feel rewarding (friends, hobbies) and feel it more intensely for things that feel obligatory (chores, family time).
• Language borrowing happens a lot. Young people sometimes use medical terms to express something real but less specific — stress, overwhelm, low mood, burnout, or even just “I don’t want to do this.”
• Identity exploration can make them latch onto labels that feel like they explain their inner world.
• Avoidance can be a coping strategy, not manipulation. If something feels emotionally heavy, boring, or conflict‑prone, fatigue becomes the “safe” explanation.

None of this means she’s lying. It means she’s trying to articulate something, and “CFS” might be the vocabulary she’s found.'

The first three are interesting - it being a reflection of overwhelm, anxiety or stress, and just using the language from their friends to frame it as illness feels like a distinct possibility.

My mother is like this, too tired, too unwell to do life’s boring stuff. But if you invited her to go somewhere nice she is the first one there looking a million dollars

Has she had a full blood test? Go to GP. At 15/16 I was chronically fatigued, my thyroid was overactive. Is she underweight?

I don't think she's lazy, but I do think she may be using 'fatigue' to describe something else.

@delightful1 - weight is fine, not underweight - I have wondered about thyroid as well. She was tested for iron but I don't know what other tests are outstanding, I should check.

Could it be things like social media? There’s such a lot of content about these sorts of things nowadays and most people claim to have something (I don’t mean that rudely)

But we all have our quirks and doesn’t always need a formal diagnosis.

Just wondering if maybe she’s come across it a lot and feels like it’s the norm or to fit in or something?

Also check ferritin, VitD & B12. I wouldn't rule out post-viral fatigue and from personal experience of an ASD teen the fatigue can be substantial.

She's actually not all that active on SM. I do think there may be a degree social bonding with friends who have it or believe they have it involved.

I'm thinking now starting point is to check in with what medical stuff she is still waiting on (now she's over 16 she gets communications directly to her) and to follow up on that and to find a time to have a conversation about whether she thinks she might be articulating/experiencing something else, and would she like counselling, for example.

yeah there’s just so much they have access to now that we never did or had even heard of! So it’s possibly had an influence even if indirectly through friends.

I had a friend for a while - she was upfront about her ‘conditions’ and I took her at her word as why wouldn’t you. The longer time passed the more I noticed that what she supposedly had just didn’t line up to her lifestyle. It was only an issue when it was something that didn’t suit her. Eg will go to a gig in the mosh pit but quit her job, or made me feel bad for bringing my son out when he had a possible virus but I wasn’t sure and didn’t come. Claimed to have a condition that if she had - she did a drug for ‘energy’ and that drug would have flared the other condition up violently. Now the thing was I don’t think she thought or still thinks she is lying - she genuinely believes it. All the conditions were things that cannot be proven with a test too. I wondered if she had munchausen syndrome or something else more related to mental health. Not saying it’s that dramatic with your DD but possibly a psychological or mental health issue that’s brought it on?

My DD has been feeling like this on and off for 1/2 years. She’s a similar age. And doesn’t know any people with CF so she can’t ’borrow Language’

What has made me find it more believable was listening to her describe her exhaustion in detail to her aunt. She defo has more energy to see friends than school BUT I think that also because her freinds make her feel good which is a bit lacking when she feels tired. I’m the same - when I’m ill and feeling crap spending time with a friend can be a real lift.

Im sick of her tiredness being fobbed off as hormones or burn out. Im about to ask the GP to do more after being given iron tablets which make little difference. Menopausal women aren’t putting up with this sort of crap explanation by the medical profession so I don’t understand why we accept it at in puberty for very young women.

If she is, as you suggest, ND then she may indeed be utterly fatigued from life and it's noisiness and having to work hard to mask and fit in.