How to cope with DDs chronic illness

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Typing the title makes me feel very selfish!

DD has a chronic illness that will likely affect her for the rest of her life and causes chronic daily pain.

Im finding it so hard with how to talk to her about it because it’s making me feel so sad for her. This isn’t the life I thought she’d have. I’m also angry at the way everything in the NHS is so slow and difficult and treatment options are sometimes limited.

No real questions as there aren’t any answers just it’s very hard living with chronic pain and I wish more than anything to take it away from her.

Find things that she is able to do and concentrate on that, not on the things she can’t do. So for example, if she’s good at art then encourage that as much as possible rather than dwell on the fact she struggles with sports. Also, fight her corner with the medics. There are medication out there that can help, do your all to try and get them. I’ve had a chronic illness since my teens, and it’s not easy but with a positive attitude she can still do well

You are allowed to mourn it. Get angry, cry, feel sad. You need to feel all that stuff so that you can process what has happened and then will be able to be better at helping her. It will be hard but the initial shock will die down. There will be times when it will be unexpectedly hard again but there will also be lovely bits.

I don't think you're being selfish at all. Watching your child live with chronic pain can be heartbreaking, and it's completely natural to feel sad, frustrated and helpless at times. The fact that you're thinking so carefully about how to support her shows how much you care. I've also come across stories shared through communities such as LeafEase where families talk about the emotional impact of long-term health conditions, and many describe similar feelings of grief and worry.

My daughters have both been living with chronic pain for years now. It is hard. It is hard to see your child suffer, it is hard that no one who doesn't live it understands, it is hard that no system is build for people who are unwell - there is nothing positive about it really.

I find it helpful to know as much as possible about my daughters' conditions. We have found techniques and medication that have helped. I don't think that my daughters will have lifelong pain. I am very hopeful about the impact of AI on complex conditions and research in general. Until then, we keep trying things.