Instead of bottling up I wanted to share it. I think the saying is " a problem shared is a problem halved"
My 13 year old son is literally going on 30! We've had our struggles over the last several months. But somehow during hormones, school, girls, & most of all me & my Health, tonight's topic of conversation was literally the most shocking & saddest thing I've ever heard.
I'm not taking it too heart, I'm trying to take it on the Chin.
I didn't cry in front of him, I let him rant & walk away before I could even breath out. I went upstairs into the bathroom, put the toilet seat lid down & just sat & had what felt like the deepest bellowing cry inside.
Have you ever had that feeling like a piece of you had been shattered?! & I was trying my god dam hardest to pull myself together & pick up my broken pieces & walk out head held high, but that last little piece I've been clinging so hard on too had died inside me..
All I asked was..
How about we go to the beach tomorrow, we haven't had much time together lately & as the whole family is going too I thought it would be a great opportunity for us. Sit on the beach, even if it rains, we can make some mud castles 😂 & eat some fresh fish & chips, sit and watch the sea & waves just have some mum & son time. We need it I need it. We can pick some shells & take a mini adventure in the caves. I don't care what we do as long as I'm with you, It will be fun
Sorry mum but I can't walk around with you being ill and that!
I don't mean to upset you but I got better things to do than sit & watch the world go by. Don't get me wrong, fish n chips sound nice but I'm going to the gym tomorrow.
I said ok, whatever you want lovey.
And then I said I'd be there most of the day & would of loved him to of come so your have to go to your dads house & stay there till I get home. Because I don't want you to be on your own.
He then said " well looks like I'm gunna be on my own soon mum, I know your gunna die! & sometimes I wish it would just happen already ! Im
Embarrassed to bring my friends over, all I hear is health health health I'm sick of it & im sick of you try n not die at the beach, & as he was walking off he said by the looks of it you do need a good meal your like a skeleton ! Only dogs like bones mum ! (Laughed) put his head phones on.. slammed the door.
I am not sharing this as a negative, I'm sharing because despite my illness I'm still a mum, I'm
Still trying my best & now it's even more difficult, it gets harder every day. & i feel like im being targeted everyday in general & obviously my own body is against me Aswell. With my new diagnosis, & this added stress I'm still trying to not break down.
It just hurts sometimes..
Written by
LauraMk30
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Oh My, no wonder you are hurting. Big gentle hugs to you.
Now, firstly I am not a Mum so I'm coming at this from a non Mum experience point of you. However, I do have experience of being a stroppy teenager (apparently).
It's great that you've sought help on this forum. It's the right place to be and while we can't call cram into your bathroom and give you a big hug we are all there with you in the cyber world.
What strikes me about the post is that you sound like you have been incredibly strong. Which is good but it's also 100% OK to crumble. No one gives you a book on how to deal with a chronic illness diagnosis. You should be allowed to talk about it and discuss it with family members who should be able to offer support. I thought this would happen with me but three months after my diagnosis my fiancé upped and left..idiot! But he was an adult.
What is coming across from what your son said in the post is that he sounds scared. Is that a possibility? It sounds like he said some pretty hurtful things and when people, particularly teenagers lash out it can be because they don't understand the situation or are petrified about the future. If you were to die I'm absolutely certain that he would be devastated. He doesn't mean the things that he is saying he is just lashing out. Maybe it's because he is worried for you, maybe it's because he doesn't understand and is frightened that you might die, maybe it's because he thinks he can't help you. I don't know because I don't know your son or family dynamic. But, getting a diagnosis of a life long incurable disease is like being hit by a truck. I only wish that when I got my diagnosis I was able to talk to others in my family about it. I should have reached out more.
Can you identify any close friends who you can talk to? Do you think that broaching the subject with your son after he has had some time to cool down will help? Maybe he needs space, but you need support.
I can't give you the answer, only waffle. But keep posting. Be kind to yourself and try to get as much family support as possible.
What a brilliant reply HappyTulip. I agree with every word you have written.
LauraMK - I don't have 13 year old sons anymore - mine are all young adults. And I don't have Lupus, I have primary Sjögren's. But I recall them saying quite similar things to me at this age and stage. I suppose I was always different as a teenager because I lost both my grandparents in a car crash when I was 11 so I wouldn't have risked saying the sort of things painful your son said to you. But my mum was very emotionally challenging and my two younger sisters were profoundly deaf so I did sometimes think this kind of stuff. And when I thought it or heard my sons say similar to me - I rationalised it (after a heart wrenched sob) -I knew they were coming from a very hormonal place where we prepare ourselves mentally for all life could possibly throw at us, as a form of emotional self defence or deterrent. It's almost as if, by saying tgisxstuff out loud and speaking the very worst case scenario, your son is trying to adopt his own coping strategies to get him through.
My oldest son is now 25 and has aspergers so he's always uttered the unthinkable things that most of us can't or don't articulate out loud. He still does this but fortunately his father and I now have some armour plating of our own to shrug it off a bit better with.
Please just put it down to hormones and the mindset of someone who clearly loves you but just can't bear watching you suffer. It's counter intuitive I know - but then that's teenagers for you! Take care, try not to let it break your heart because that's not what he's aiming for. He's just full of raging hormones and awash with peer pressure of school. Please do keep on posting - this is a great place to offload and we are all here for you 🤗
I have to echo this - my son is on the autism spectrum toward the moderate-to-severe angle, but I was always sick. He was afraid I would die every time I went into hospital. He's becoming accustomed to me having to beg off doing things I wish I could do, and he was also very angry about being stuck at home with me because 'you never do anything'. However, I see glimmers of more compassion in him - he is visiting his grandparents and he calls me to see how I am (something he has NEVER done before, he doesn't have that kind of awareness outside of himself), and he checks up on me when he's home and interacts more than he used to. I don't know where the change is coming from, but after 13 years of his more or less indifference to my existence, I will take it.
I bear witness, and I share gin and sympathy. Your son knows what he's said, and as a teenager I expect he was also marvelling and cringing at what was coming out of his mouth, but too stubborn to apologise. Being a teenager is like being in a perpetual state of Hamlet...thankfully this too shall pass.
I wish you succour, and a place to come and weep when you need to. You are seen and witnessed.
Hi Laura I can only add that Happy tulip & Twitchy have said it all. I've brought up 4 children and at 13 they are barely presentable! Our eldest is the middle school headmaster of a top all boys school ( which I think presents a whole lot of challenges). I applaud his efforts in managing hundreds of 13 year old 🐒🐒🐒.!
Your son is literally picking up on what will have the biggest impact on you, basically for effect. It's part of the maturing process.
So try not to take it all to heart. He won't even remember he has said these hurtful things to you, I'm guessing.
It does hurts, you will cry and it is best to talk about it. Hang in there, you are in the middle of a life changing event.
I agree with what everyone has said so far. Mine's only 7 but she gets angry when I don't have energy for her. She even gets angry at the diet I'm on, because we can't go out to eat (not that she likes restaurant food anyway!). The other day she said to me "Shall we have a competition as to whether your mum or you will die first?"
Hard not to be hurt by this (I was driving at the time and felt like I was going to crash the car), but it is just fear. Nothing is more scary to a child that even the remote possibility of losing a parent. They want us to be immortal and without needs, because children need it all. So they lash out with anger and callousness.
Fortunately now I'm stabilising on meds it's easier to sideline it as a topic of conversation, and I can do more (but it's never enough lol!). But in the early days it was awful. I actually blacked out in front of her once (and no-one else was in the house) and for several months afterwards she had to check where I was.
I just spent a lot of time repeating the phrase, "Mummy is ill now but I am going to get better." And once you get the care you need and deserve, you will get 'well enough' to be less scary for your child. Take care.
Hi LauraMK, I feel your pain. My son is 18 now and he now understands better about my illnesses. At 13 he wasn't understanding and I remember several heart breaking conversations similar to yours. I had a small group of friends with children the same age and although they didn't have the illness issues we have, they still had similar conversations with their kids. Whether it's about chores around the house, school uniform shopping, just having a day out, they are turning into young adults and pushing their new vocal confidence and emotional boundaries. It's hard when you feel guilty about not having the time because if your illness. But as time goes on this awful phase will pass and they will learn more about life and emotions and feeling and needing people, they will one day turn around and say something amazing.
My wonderful son at 18 recently came up to me and kissed my forehead, gave me a hug and told me he loved me. It made all those years of stress ok. Completely out of the blue. He was once that stroppy teenager..... just bear with him. I know it's the hardest thing in the world, but I promise it will get better. sending you that kiss and a hug in lieu until you get your moment. xox
Oh, how I wish you lived next door so that I could come round, give you a big hug & we could dissect our teenagers' behaviour until kingdom come! I've just read your post with tears streaming down my face.
The replies so far have been fantastic & I would definitely agree that your son is scared. We don't understand this very strange illness sometimes, so goodness knows what's going on in his mind trying to make sense of it all. Throw in the hormones & that this is the most challenging period of his life! It must be so awful for him to see you when you're struggling & I'd say he probably does worry what the future holds. Unfortunately, teenagers are incredibly self centred by nature, so he'll also be seeing it as how it's ruining his life too.
I have two teenagers myself & my 15 year old daughter gives me a terrible time. I really don't know how any of us survive it!! She also says incredibly hurtful things but I always console myself that I'm the one person she feels safe enough to say anything to - no matter how unreasonable, rude, downright mean & utterly selfish it is. It's drama & fireworks all the time which, as you say, is very difficult anyway without the illness adding to it all.
Your son does love you hugely & he would be utterly devastated if anything happened to you. But I do know how impossible it is to believe it sometimes. One day at a time.
Sending you the hug & I hope today is a better day for you
I agree absolutely with all the above replies. Having a teenage boy can be a nightmare even without an llness to cope with.
Unfortunately at that age empathy completely passes them by, it is all about him, his needs and wants, he couldn't care less what hurtful things he is saying or about his selfish actions.
Please do not take this to heart, it is normal hormonal behaviour and one of the trials of parenthood. It will get better, he will become more considerate and kinder but I am afraid you have a few more years of this yet.
Next time you suggest a trip, ask if he would like to take a friend, this will help avoid those "boring" moments looking at the sea. I don't know many lads who are willing to sit with their mums and do nothing else all day. He is not a little boy any more, he has outgrown mud castles, he is now into music and hanging about with friends. Have you asked him what he would like to do whilst you are enjoying time with the rest of the family?
It does sound though, that he has some difficulty accepting your illness and perhaps a friend or family member could help to reassure him that you are going to be around for a very long time!! Also try to limit the amount of time spent talking about how unwell you feel, he can see your limitations, how much medication you take and rest you need. He may be worried not only about you dying but also about his future and if it will involve looking after you and the responsibility it brings.
I would be more concerned if he didn't lash out now and then.
Ouch. No wonder you hurt. I can't add much to the fabulous replies that you've already had, only to echo some of them.
There is a Emo Phillips joke that I like, "My daughter has turned 13 and this year the school says she can start Drama lessons. Drama lessons for 13 year olds?! That's like teaching Mexicans how to speak Spanish!"
Your son is definitely at that stage, and your illness provides a clear focus for his emotional turmoil. But if it wasn't that, it would probably be something else. At least he is saying it out loud to you, and that gives you a way of talking about stuff in the open.
If he does have particular issues around caring for you, most areas have Young Carers groups (I used to be a YC support worker), and they can be really helpful in helping children and young people make friends with others in a similar situation, organising social activities and so on.
You have had fantastic responses. There is not a lot I can add - except as someone who came out the other side.
As a grandma I can only say "all 13 year olds are challenging" That isn't the word I could have used - but it is fair if understated!
When my older daughter was 12 my husband had cancer - we had a horrible year, I didn't know whether I was coming or going and I know I let both the girls down badly. No-one else took any interest, my mother and brother who lived 10 miles away wouldn't come to visit us because they "couldn't bear to see D so ill". His mother who lived with us turned her face to the wall and died because she was so convinced he was going to die. Well, gee thanks - how about us? Nat turned into a nightmare teenager trying to deal with it. Esc's schoolmate turned round to her in school and said "Is your dad still dying then?" They neither of them ever mentioned it to me. Their schools were worse than useless. Nat was picked on by the nasty piece of work who was depute head - "it doesn't matter what the family is going through, that should not impinge on her behaviour at school". All she'd done was try to bunk off for the afternoon.
I suspect your son is facing similar comments from his peers at school - I won't call them friends. Even if he didn't think it - he is being fed it. And he is terrified. I bet your son went out and cried too if he even thought about what he had just said. But guys don't do that...
I know 13-year olds are presented these days as big tough guys, streetwise and all knowing. They aren't, they are still basically children. But they are under pressure to be something they aren't really - that's why he thinks he should be at the gym. 13-year olds shouldn't be using gym equipment - for a whole load of reasons, not least they should be for over-16s. Messing about in the pool, on climbing frames but not "the gym". This is Natasha Devon's view on it - I have a lot of time for that amazing young woman!
Both of you need support, especially emotional support, and a place to vent and be guided into a better place. Children shouldn't have to face up to this on their own - but so many do. But neither should the person for whom they are caring - and caring means a lot more than the physical things required - he may not be doing that for you. But the emotional burden is there.
My husband survived, the girls survived. I'm not sure they survived unscathed - but one is now a nurse and the other a paramedic. However awful their teenage years they will get there. But he - and you - will get there more easily with a bit of a helping hand.
I just want to say a MASSIVE thank you. I honestly am blown away by all of your heart felt loving messages. I can't express in words how much all of your messages mean to me.
I will reply to each one of you later when it's quite & can reply properly.
My son & I made up after a few hours of silence. He broke up with girlfriend, he was angry and frustrated with his hearing, fell out with his best friend, so yes I can imagine why his fuse had gone.
He apologised and gave me a hug which washed away all the sadness. He really did wanna go to the beach, & just chill with me. & felt really sorry for saying all those horrible things.
So today, I woke up to all of your fabulous messages, literally turned my frown upside down, your all so amazing & wonderful with words. Thank you from the bottom of my heart
my lupus booklet arrived in the post. So I'm having a cup of coffee & a good read.
It will make it easier to explain to my son exactly what I have been diagnosed with.
We love each other dearly, & love will conquer all.
I'll message you all later, my son has boxing today so this should help with frustration etc. I think I'll need a bag too ❤️👊🏻
So happy to read this. I've been wondering how you have been today. No need to reply to me, use the time instead being kind to yourself and spending some fun time with your son.
Just a thought, and again I come to this as a non-mum. I have learnt a lesson about managing expectations with my friends. I am really lucky to have some good friends and I make plans with them, but they know and understand that if I wake up in the morning and am not well I will have to cancel. So far, as long as I explain this to them they understand. Or we make a plan B, which usually involves them coming to mine to watch a movie and get a takeaway.
I was thinking that if you make plans with your son to go out, maybe you should have a plan B which involves doing something not so taxing, just in case You aren't feeling so good. It can be a plan you make together but it might manage any disappointment, and I hate to use that word, and then he may not get so upset. Like instead of going out on a trip because you feel rough, how about, let's have a movie marathon and cook a wicked chilli together. That sort of thing. You still spend time together but there will be times when you will want to push your body further than it can go just to keep commitments to others. Plan Bs can be fun to come up with, maybe let him take the lead. Just an idea. X
I'm really pleased to hear that you and your son have talked further and you have a better understanding of where this has come from. I'm really pleased to see the fantastic supportive messages you received from the rest of the community and I'm glad that they were helpful.
If you haven't seen it already, our booklet, 'Caring for someone with lupus' may be of interest? You can read and download it at lupusuk.org.uk/wp-content/u... or if you'd like a physical copy posted to you, just send me a private message or email paul@lupusuk.org.uk with your name and address.
If you are concerned that your son is struggling with his emotions at the moment, you may want to consider looking at family counselling as a way to be more emotionally intimate with one another. You can find more information about this at relate.org.uk/relationship-...
🤗🤗sending lots of hugs, you have got some good replies just wanted to drop a quick message to check in, hope you are feeling brighter now. Take care.xxx
Aah Laura I read your first post & boy did it remind me of life with my teenage children!! I was so pleased to read your second post, the happy one & yet again it reminded me of my life with the teenagers when remorse had been felt & a little awareness of how much they had actually hurt their mum. You did receive excellent caring posts, but now they can be saved for another day. Bless you. I hope you get to that beach & relax! Thinking of you xx Pixiewixie.
I am short of words and i have no clue of what to say to u only that i will pray 4 u. I have a 5year old, reading ur post am abit worried how he will turnout in his teenage years. All i can say is i will pray for both of u. Take care and God bless.
My heart was broken for you reading your first post. We forget how hard it is to be so young and having to deal with a chronically sick mom is scary so they lash out. Soon as it's left their mouths, they regret it.
When my daughter was 13, she was like a banshee. Venomous tirades of I hate you and worse, much worse and then I got up one morning and she'd gone. She left a note saying she was sorry and that she didn't deserve a happy life. I was devastated, my whole world fell apart. Long story short - she was found thanks to Cheshire and Merseyside police - and after lots of tears and talking, she was being bullied terribly. Being told that I hope your mom dies, is she dead yet, etc.and taking it out on me was the only way she could deal with it. Boo is now the most wonderful, caring girl in the world. I still have the note and when she's ready, we'll burn it.
I wouldn't be 13 again for all the tea in china! As our wonderful friends have pointed out, hormones, peer pressure and a boy changing into a man is no easy feat. However, he has a wonderful mom of that I have no doubt. You also have friends on here who will always listen, pick you up when you're feeling down, and send the best virtual hugs ever.
Wow happytuplip ! You truly have a way with words. You may not be a mother yet but you certainly sound like your make an amazing parent.
The bit that touched me a lot is when you said " while we can't all cram into your bathroom & give you a big hug" at the present moment that's all I wanted, so as I have no where to turn, this forum was my little cry out loud, & after reading that part ^ I smiled & cried at the same time. That was a really heartfelt & beautiful way of comforting someone from afar. & what a wonderful cyber world it is when I'm surrounded by wonderful people like you & all those that have commented.
Aww, being strong is all I know , I'm my own worst critic & The only enemy have is my reflection. I think it's ok to give yourself some credit, I've never been fully proud of myself, but since becoming so unwell I've realised that those who are suffering just like me are one of gods toughest soldiers. We may not wear a uniform, with badges & medals on show
but we do have our scars from each battle we have fought, our skin is blooded & bashed from the enemy, we have spent many days & nights led awake, on guard waiting for the next explosion, the next bomb to go off, not around us but within us. We're on the frontline, & no matter how hard it is, or how tired & weak we may become I know one day we all will unite & celebrate our victory.
I used to think if I revealed my weaknesses I'd be seen as a failure, it's taken me many years to realise it's ok to not be ok. & there is no Shame in crying. It's a good thing to express how you feel, & after sharing it on here I feel so proud to be apart of such a caring community.
If there was a magical book on how to deal with a chronic illness I would purchase it.. but I think we're all in the process of our own unique story, & we have new chapters upon us.
That's awful! Well it's his loss! Sounds like he's lost a diamond whilst collecting stones.
Your most correct about my son, you've worded it perfectly. My sons father has very recently broke up with his wife, he's moved out & they are now getting a divorce. They've been married 9 years. This all happened Monday morning, & now he has more to worry about not just our argument. He has to now learn to adapt in new surroundings, we share custody my son is with me more, but has now decided he wants to be there for his dad,
I have to find it in me to respect his wishes, & except that due to these circumstances it may be different for a little while.
I know he's not a little boy anymore, jeez he's 13 in a half & 5ft 8! I am 5.10!
But I guess to me he'll always be my baby boy, I can deal with hormones, girls, school, social media obsessed selfies & Acne. But it's difficult doing it alone, sometimes I feel like I'm 17 again scared & weary. That's how old I was when I had him. I'm 31 now & I'm much more wiser, there's not an instruction book for parenting either, if there was I'd probably give that a read too Lol
I'm just trying my best I guess that's all we can do.
& yesterday we went to the E.N.T clinic, he had to have some hearing tests.
We sat opposite each other in the doctors office, & his cheeks went up & mine did too & we both broke out into a fit of hysterics ! Thankfully the doctor wasn't present!
But we were making a negative situation into a positive one. So he's deaf in his left ear & now borderline in his right! Glue ear..
so the solution is a hearing aid in 3 months time.
We have to do some pressure popping techniques in the meantime to see if it helps, but he's happy with his choice of an aid.
It's gotta be terrible not being able to hear properly, which is bound to effect his mood, school work, confidence & life in general. But I think this hearing aid will be so Beneficial, & I have a good feeling that things will change for the better once I know he can hear crystal clear. That will be a joyful moment.
I have one friend to talk to but I lost the rest when I fell poorly. They assumed I was highly contagious/infectious & to stay away from me, which in itself was horrible, I felt/feel humiliated beyond repair. But hey I can't please them All, & it shows, they were not good company, I knew after hearing some horrible remarks they made about my legs & how disfigured & how ugly they are, made me realise I was better off on my own. I didn't need or want people like that in my life. Life is hard all by itself. I didn't need them Making it just that extra bit harder for me, But my boyfriend is my best friend, he's my comforter & most of all my saving grace, & I have my family, I suppose the moral of the story is, id rather have one true friend than a load of fake ones. I feel blessed.
My son and I are two peas in a pod. We're both battling our own unique war, but no matter what we may come up against we will Always have each other. "We found love in a hopeless place" we found each other in the dark.
Thank you so much, your a diamond, I really appreciate your message it means so much too me. Everything you said hit the nail on the head, your very wise,
I'm learning to be kind to myself, it's all one big learning curve, but I'm sure I'll get there In the end,
I am so overwhelmed by the loving responses. Everyone is so wonderful here.
My son isn't aware yet that I have lupus. I haven't had a chance to speak to him but I have planned ahead of time to break it to him gently. But I will take a look at the link you have sent, because I think my family & partner might appreciate reading it & maybe it will help them Aswell as it will my son in all good time
We've decided to have counselling. I think it will benefit us, My son is older than his years & has grown up so quickly, he's very independent & very assertive in all aspects & were much closer now because we're very much alike in character & emotional at heart, so now he's being more open & coping better with his father & step mothers divorce. It was a huge shock for him mentally & emotionally, plus it was the icing on the cake seeing me so poorly, &falling out with friends, it just had a massive impact on him. & I understand his anger frustration and bitterness.
We're like the best of friends now, stronger than ever. It's a very difficult time for us.
Thank you for messaging, and I would like it sent in the post so I will send you a private message.
I'm really glad that you are finding it helpful being a member of this site. It is a really brilliant community here - we are very lucky!
I'm so pleased to hear that you are stronger than ever with your son and I hope that some counselling will be of benefit to you both. Please keep us updated with how you get on.
I will look out for your private message and be happy to send the booklet for you.
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Single mum, worried what will happen if this Lupus gets worse... who will look after us?! :-(
Does anyone know if theres a likeleyhood of my son also having Lupus too
