The intense despair and loneliness of parenting a chronically ill DC

[Tabbouleh]

Don't know where to begin or indeed why I am typing this except to vent. NCed for this. Please, I don't want any practical advice because I am already on other boards doing all I can. I just want to say it out loud.

Been parenting chronically ill DD for over 7 years now ( with DH but he works long hours) She is now a young adult. It's a disease that is not life threatening, but debilitating and incurable. Comes and goes in stages. Was getting a lot better before the pandemic but has now gone back to square one. Very intellligent, but has had to drop out of uni, which she is in pieces about as she can't see a future. Wants to go back in September but I am not sure it will happen.

Done everything. Got her private medical care, therapy, special diet etc etc.
I have lost hope now. It never seems to end. She gets better and then relapses, so in a way we can't make any proper decisions about uni, life or anything. She is very difficult to live with. The stress of her illness as ruined my life and my marriage. Today is a lovely day, DH asked me to go for a walk, but I know we will just talk about DD and bicker, so I am on my own in my room. DD is crying as usual as she feels bad now.

Lost all my friends as they don't have any emotional energy left for me, esp post the pandemic. I get some support from my mom but she is getting older and tired after the last 7 years. I have a DS who has had to basically rear himself. My work is affected as I take so much time off to look after her. I am sad all the time. I have just been put on ADs but what I really want is for her to be normal and happy like all the other young women.

That sounds very sad for everyone.

Are you working towards some kind of independence plan for her in supported living etc? Would she qualify for PIP and support from carers?

Is this something like anorexia? A colleague of mine has a daughter who has it and the impact on their family life was absolutely tremendous. I really feel for you. 💐

That sounds awful and I'm so sorry that your and your DDs life is so far away from what you wanted for you both.

No practical advice or platitudes as requested - just an acknowledgement that life is shit and it's really unfair.

My heart breaks for you op. This sounds so, so hard, not to be able to make plans and move on with your own life knowing your DD is ok. I'm so sorry.

I hear you. You are my mum 20 years ago. I was diagnosed with crohns disease at 16. It was absolutely brutal for all of us. Even now that I'm in my 40's and my mums in her 70's I see the pain etched on her face when I'm unwell. I do everything I can now to protect her from it as she's done enough and I have my own coping mechanisms but I know the worry never leaves her. My own DS is now 13. I'm terrified of the same thing happening to him.

I dont think there is any greater pain that watching your child struggle with crohnic illness, it's unrelenting, you live in this terrible limbo. Every waking thought is of them. So much worry , so much fear for the future, its absolute torture. All your hopes and dreams for them, all their hopes and dreams all become a distant memory. I know my mum didn't socialise at all during the early years post diagnosis, she said she felt guilty doing anything for fun for a very long time, she even felt guilty eating as I couldn't.

Having said all of that. Having been so desperately poorly from 16-24 year old I did get my life back on track. I did eventually finish my degree, I've had a career in the NHS for almost 20 years (albeit part time), I have a wonderful DH and DS (yes we had to stop at one child). You do eventually learn to cope, you're just on a different path.

As for my lovely mum, she's got her own life back. She sees friends, she enjoys holidays and meals out. It's was a very difficult dynamic for a while as I wanted to pull away and become independent as young adults do but I still needed her to look after me. I was so so ill. It all took that bit longer but I did find my feet in the end.

You're going through something that others just can't begin to understand unless they've been through it themselves but you will come out the other side.

2reefsin30knots unfortunately there's a lot of crohnic illnesses that don't qualify for any support. You fall through the cracks of being too ill for full time education or work but not ill enough for any type of benefit. You wouldn't believe what I've been through, never qualified for a bean.

Another thing is that even if your DDs health doesn't improve, your DD will change and learn to cope better with it. I'm not the girl I was in my late teens/twenties, I don't need my parents to look after me when in ill anymore, it just becomes your 'normal'.

Chronic illness is also a fantastic way to filter out life's arseholes. My DH is such a wonderful man, the arseholes would have run a mile at the 1st experience of a flare up, he's never budged. He's such a fantastic support. Your DD will find other good people to lean on.

You're also in the hardest stage as your DD is trying to get through uni. I had to come home, I ended up doing my degree part time whilst living at home, in a subject that wasn't my 1st choice but I made the best of it.

It's awful isn't it. Go on the walk and make the choice to have an hour or so off. It's good sometimes to just put your brain into neutral to give yourself a break from all the worry.

This is exactly how I feel all day everyday. Your mum must be proud of you.

I hide how I feel as it is too much for most people. My immediate goal is to help DD return to uni if at all possible because she really wants to.

It is not a genetic disease and no one else in the family has it, so I did not foresee it. Didnt foresee the effect the pandemic would have on young people either.

Tabbouleh thankyou, yes she is proud of me, I'm proud of her too. I didn't understand her pain at the time, I was too young and going through so much myself that you just don't think of the impact on your loved ones.

They were the darkest of days though, when you can't even see a chink of light at the end of the tunnel, our home was just filled with sadness and worry and grief, it consumed us for many years, at a time when all my school friends were off living life, we were all just trapped by my illness.

We could fake happy for a bit but it never lasted long. The love never went though, I don't want to sound corny but it's true. Fierce, protective love, you don't feel despair like that unless you really love someone.

I know it's been a really long time for you, 7 years of normal life is a long time but 7 years of pain and worry like this is an eternity. Time just feels like it's standing still.

Keep going though, just keep going, a minute at a time even, that's the only option you've got, one day it will get better. If it did for my family then it can for yours too.

It's also very hard to connect with people in the same way. Other people's problems just pale in comparison, how do you meet a friend for coffee when they're talking about things like their car breaking down or Dave's redundancy, it makes you want to scream at the world-do they not realise how lucky they are?! Do they not understand what you're going through?! And you have to nod along and be understanding and pretend everything's ok when your world is just falling apart but of course its been 7 years and no one wants to hear about the same issue for 7 years so you bottle it up and have no one to talk to about it or you don't meet them because there's no pleasure in being angry and upset at people.

Sorry, I'm just rambling now. It just impacts so much and people have no idea.

Strangely my daughter's illness spanned 7 years too. We were all trapped too. Things were so bleak. She was continually trying to end her life. It was terrifying and relentless. I thought that would be our lives forever. She was hospitalized frequently. It was truly awful. She finally reached the stage where she was a bit older and along with support from the nursing staff and her psychiatrist she did start to improve. It didnt happen overnight and it was incredibly difficult but she did improve.

She has started driving lessons and she loves it. She is saving for a car. It wont be the fanciest car in the yard but she doesn't mind. All she wants is her own car.

I wont go into all the detail but it was so frightening. I thought we had lost her so many times.

I dont know the answer but time and medical support helped. She just kept on ploughing on. I never believed it would happen but things did improve

I hope this helps to know that things can and did improve. I wish you all the very best x

Thanks for all your messages. They have helped a lot. @LakeIsle48 my DD has MH issues too but not as bad as your DD's. You really have been through so much but am glad things improved.

@Keyboardconundrum221 I totally I identify with your posts. I find it hard to connect with friends with "normal" children and those who are not constantly fearful. I spend a lot of time on solitary walks and on my own.

I need to keep hoping and waiting because honestly there is no other choice when you have DC.

I'm sorry it's so hard for you, OP

I'm so thankful for my 2 dogs, they're much more reliable than humans. I get out the house twice a day, and can just walk for miles. It's so good for clearing your head, and I'm like a bag of adders if I can't do it for any reason - it's my few moments of sanity every day.
It's no comparison at all but DH has been really unwell over the last few years (and he doesn't help himself with his diet, lifestyle and attitude) and I find the frustration can really get to me if I let it.

I did walk for miles today @Badger1970
I wish I could get a pet. I adore both dogs and cats.But I can't take on any more responsibility.