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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To feel terrible guilt at bringing my chronically daughter into the world

27 replies

Hippilongstocking · 03/10/2018 10:20

Have NC ed for this. I am a regular poster on the SN board. I don't know why I am posting; maybe just to get this horrible guilt off my chest and vent. I am not looking for medical advice. Trust me when I say I have done all I can.

I have a chronically ill teen DD. Her illness is of a type that is invisible but affects her whole life. Special diet, special hours, special tutoring.....Lots of missed school, outings with friends, holidays and so on. There is no cure, only palliative. On a good day you would not know she was ill. On a bad day she cant even get out of bed. Often she says she wishes she could die. Before you ask, she is on anti depressants and in therapy. So am I.

We have all the support we are entitled to. I am still exhausted mentally more than physically.

I feel terribly guilty that I brought her into a world where I can only see suffering for years. I feel guilty that I have no time for D'S. I feel guilty that I have no time for DH. I feel guilty that in spite of being very bright her opportunities have been curtailed by her illness. I feel guilty that her friends have stopped asking after her health and are gradually shunning her because she cant keep up with them.

It is the worst feeling in the world when your child says "Mama i am tired of it all. I cant go on.' and you can't help them at all.

OP posts:

NigelMolesworth · 03/10/2018 10:23

That must be so hard. I wish I had an answer but wanted you to know that someone is reading and thinking of you.

Babyshark2018 · 03/10/2018 10:24

I have no advice but I just want to say you’re doing an amazing job and it is NOT your fault.

FellSwoop · 03/10/2018 10:28

Oh love! There can be nothing in the world as difficult as having to see your child suffer...My little boy (3) has had several major surgeries in his little life, he's fine now. Each recovery was heartbreaking for us to go through, seeing him in pain. I can only imagine how traumatic and stressful that must be for you to live with on a daily basis.
I wish I knew of something helpful to say. You are doing your very best in extremely difficult circumstances.

Singlenotsingle · 03/10/2018 10:31

It brings all the petty issues that most of us have to deal with into proportion, when reading about a serious problem like yours. All respect to you. You're doing an amazing job.

Ennirem · 03/10/2018 10:38

I truly can’t imagine how hard that must be for you and for her. Today must be a very hard day indeed for you to be feeling so full of despair.

Try and remember the last time she was laughing, really laughing. She has good days. It will happen again. She is a totally unique individual and no one else could see the world quite the way she does. She needs to be here. Don’t ever feel guilty that you made her xx

FellSwoop · 03/10/2018 10:41

Couldn't put it better than Ennirem just has.

lifecouldbeadream · 03/10/2018 10:44

Life can be utterly shit. It’s awful when a child is ill/suffering at this level. Hard for you all. I have no good advice, just hope for you that the hard days are as few as they can be, and the good days as many as they can be. You will be strong because that is what Mum’s do... Your DH and DS will understand. X

finallyme2018 · 03/10/2018 10:44

My son has a chronic illness from a birth defect. I have the same guilt that he suffers daily and has to fight to have any resemblance of a normal life. As much as I love him and make him my whole life. If someone had told me what his life would be like and the times when I'm holding him in my arms whilst he's sobbing. Then I would not of continued with my pregnancy at all. But then feel guilt for feeling like that. I don't know what the answer is but please know you are not alone and it normal to have these feelings and it's ok to admit your struggling as tomorrow you'll get up and fight again for them because it's our job as there mum.

Lifting · 03/10/2018 10:46

You are under terrible strain. You sound like a great mum. You and your daughter are really suffering but that is not your fault. I wish I could help x

nooddsocksforme · 03/10/2018 10:48

That must be so difficult. It hurts so much to see your dc in pain and feel that they are not having the life you would want for them. Try to be good to yourself in whatever small way you can and remember the love you have for your dd will be helping more than you know.

Rainbowhermit · 03/10/2018 10:51

I can empathise with this - my daughter also has 'invisible' but chronic mental and physical health problems and regularly tells me she cannot go on, and has 'had enough'. It is the hardest thing. And yes, I feel the guilt too. Some days worse that others. It helps a bit to know we are not alone. Try to be kind to yourself, take even small breaks where you can. I find walking helps sometimes. 🎉🎉❤

Xenia · 03/10/2018 10:52

It sounds really difficult. Would it work for you to spend less time with her eg could she get some kind of residential place or you get a live in au pair even if just to help with other things around the house?

akerman · 03/10/2018 10:54

It sounds so, so hard OP. I'm so sorry. My son also struggles with a chronic condition - it is less severe, but has led to vicious bullying which made him more miserable than anything. I relate to the guilt, especially to the guilt of not giving enough time to his brother. At the end of the day, though, we can all only do our best, and it sounds as if you are a wonderful mother and you are setting a wonderful example in how to pick yourself up and carry on, even when it's the hardest thing in the world to do that. And there will be brighter days again to counterbalance the really hard times. Sending love xxx

abacucat · 03/10/2018 11:02

SIBS is an organisation that supports siblings with chronically ill brothers or sisters. They could offer some support to your DS.
I think MN is great for being able to say the things that we may not be able to in real life. Sadly sometimes all we can do is get through each day and try and build in small treats along the way to help us through.

SchadenfreudePersonified · 03/10/2018 11:26

There is nothing I can add. My heart aches for you all. It is so hard watching a child suffer, and hard for siblings whose lives are curtailed but the needs of their brother/sister as well as for your poor DD.

Holding you all in my prayers

ScienceIsTruth · 03/10/2018 11:34

However you're feeling, please know that it's ok and perfectly normal to feel like that.

I think you must be a strong person, and your dc is lucky to have you as a mum. Also, we all have our bad days, but that doesn't make us bad people.

Cutietips · 03/10/2018 11:53

I’m so sorry you are going through this. It’s such a difficult situation. As hard as it may be, it is so important that you prioritise some time for yourelf and your husband and DS so that you can have the emotional energy to support your daughter. I wonder if you feel guilty having any time to yourself or doing fun things because your daughter struggles but it will only benefit her if you have some pleasure in your life. Your daughter is sharing how she feels in her worst moments, which means she trusts you, which is so important. She may however, not feel that way all the time. Hopefully sharing with you helps her to manage more successfully outside the home.

bridgetreilly · 03/10/2018 11:56

It is NOT YOUR FAULT.

I know, it's hard to believe that and hard not to feel the guilt, but it is true. Please try to be kind to yourself, as well as to your daughter.

BonnesVacances · 03/10/2018 11:58

Does your DD get any joy from her life? I know as parents we want the best for our DC, but we can still help them have a good life, albeit compromised by illness.

My DD has ME, so I understand, and one of the things that keeps me going is finding ways to make her laugh and give her small pockets of joy. It is shit though, but then I look at DC who are literally fighting to live and I feel ashamed that this feels so hard.

You say you have all the support you're entitled to, but do you have any RL emotional and practical support?

dontgobaconmyheart · 03/10/2018 11:58

This really caught my eye as I was in your daughters position as a teen, and unfortunately still am as an adult, in the health sense. I worried a lot that my mum carried guilt as although she is not affected, the issue is genetically inherited.
Mine is also mostly invisible and it is an endless uphill struggle to get people to understand or to keep friends due to the fact ,as you say, you just cannot keep up and would make yourself iller trying. Almost exactly as you described, on a (rare) good day, I even feel reasonably normal myself sometimes but quickly tank after a few hours of activity and cannot continue. I also was academically bright and on course to do well (Think scholarship, onto a very good uni etc) before that had to be abandoned around age 17, just as all my friends left to start.
One thing your daughter has I didn't is your full support, it took many many years to obtain a diagnosis for me, during which time my family cast aspersions often as to whether I was pretending, trying to 'skive' off of school etc, and I really struggled emotionally and physically thinking I was just lazy. You sound like a wonderful mother who is doing her best. Just because you feel guilt doesn't mean you should.

I do think persevering with therapy is important, keep talking about the guilt and don't hide from it. You aren't culpable and can't control what's happened, you deserve to be free from that guilt.
Have you considered setting your daughter up with similarly affected individuals? Even if this is in line is will offer her some relief from the isolation and allow her to talk freely with people who just 'get it'. I've recently discovered a brilliant charity for my condition and have joined the online forum and support group. Im not hugely active due to being so used to being anti-social but knowing its there is helpful, and a start! They also help arrange local support groups and can put you in contact with these as well as offer a magazine with health news and medical info. Perhaps there is similar for your daughters condition? You could even join yourself if so and find parents in a similar boat perhaps. It all seems trite sometimes , but could help her emotionally.

Are you able to pre-arrange care for your daughter on a regular interval to spend pre booked chunks of time especially for you and your son perhaps?

Chronic and long term illnesses are unbelievably cruel and sadly there never seems to be an answer other than keeping on and focusing on small wins and keeping mental health as much of a priority as possible.

allthgoodusernamesaretaken · 03/10/2018 12:01

How sad for all of you.

Cutietips · 03/10/2018 12:07

Sorry OP just wanted to clarify, when I said she may not feel that way all the time I meant that she feels tired of it all, not that she can’t trust you all the time!

nellieellie · 03/10/2018 12:15

I don’t know what to say. What you, your DD and some others have to go through is just not fair. It’s not right, and the world can be a cruel callous place. All we want is for our children to be happy, and healthy. Your poor DD. The only thing Is that in your post you say that sometimes your DD can be OK. When you feel so sad for so much of the time, I suppose there is always living for those times when things are OK, when she can have a good time. When things are bad, to think that there will still be better times.

kesstrel · 03/10/2018 12:22

So sorry, OP. I think it's important to have the right kind of therapy for something like this - CBT (cognitive behavioural therapy) might be useful, assuming that's not what you're already doing. Also, some people find group therapy or support groups helpful as well.

Doubletrouble99 · 03/10/2018 12:38

I am in contact with lots of parents of Sen children and have two ourselves, however our two are not as affected as your daughter but do have mental health problems.

The guilt so many parents feel is palpable in so many groups I am part of, guilt in not being able to be with their other children or partners more, guilt for giving them medication for their condition (ADHD and other mental health/behavioural problems especially) and guilt for giving birth to their child.

Having a child with sever problems is so mentally taxing and draining it affects the primary carer immensely. I, as well as so many I know am on anti depressants which do help. The other things that helped me are making sure I have time for myself and getting counselling.

I wonder if talking through this guilt with a professionally trained counsellor might help. Guilt isn't something that just goes away, a bit like grief, you can't just 'get over it'. It is all consuming and is completely sole destroying. I would go and speak to your G.P. and explain exactly how you feel and how this is impacting on you and your family and see if they can come up with any suggestions.
Good luck and hugs.

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