Supporting a loved one with a long term condition

[Scarletpetunias]

My DD has a long term condition that flares up sometimes and is extremely painful for her. It’s quite rare so I don’t want to go into detail, however whilst she is able to work etc, at times this is very difficult for her and it curtails other social activities which is difficult as she’s only in her 20s.

I am just at a loss as to how to help her. She’s having a bad time at the moment and has just been on the phone in floods of tears due to her pain and I’m feeling desperate myself as I really don’t know what to say or do. She is under a specialist consultant and they are changing medication again so that may help but does anyone have any words of wisdom about how to support? It doesn’t matter what age they are, seeing your child in pain and being unusable to do anything is heartbreaking.

This is going to sound lame, but being the person who will keep listening when she needs to cry and say how awful things are is really powerful - with long term conditions most people aren't willing to do that so it becomes isolating. (Or people will ask when she's going to get better, shut down conversations with "feel better soon" etc).

It must have been awful hearing her so distressed and not be able to fix it, but sitting with her (albeit from a distance) in her distress without minimising or brushing it off was doing something.

I'm sorry I don't have anything better to offer. It sounds very, very tough.

@tickticksnooze thank you so much for your comments. That’s pretty much all I have been able to do. By nature I think I like to try and fix things (probably like most parents) and it’s the fact I can’t that tears me up. I’m trying to come to terms with ‘just being there’.

Having someone there to listen means the world. Let her cry/moan/whinge/vent. You don't have to give solutions. Then when she's done, sympathy, empathy & a gentle kick up the backside to get back to positivity (my husband does this for me).

A positive mindset is one of the most powerful things she can have.

She's lucky to have a mum there for her.

I understand from both sides.
I have 2dc with long term chronic conditions which cause them to have to 'modify' life. As that parent its so difficult to watch your child go through so much pain and not be able to take it away. And I'm finding that even harder as one is a young adult and taking over his own health care, not needing the practical care that often helped me get through the rough times being practical.
In my 30s I became disabled and lost touch with most of my family and freinds (I was no longer the person they could rely on). The things I wish i had (and hope I give to my dc) are acknowledgement that it hard at times, acknowledgement that I'm doing my best, not being asked when I'm going to get better. I don't need someone telling me what to do to get better (id do it if i could). I wish I could break down and cry to someone sometimes, I wish I could moan on my bad days without feeling I'm a burden to people. I don't like to ask for help but I wish someone would ask what they could do for me sometimes.
I think your being a wonderful mum allowing your daughter to be upset and the fact she can come to you is good. I also think acknowledgement that you can be sad, feel useless and have many feelings about the situation is also useful. When my dc have had a troubling time I often have a good cry then make myself pick myself up and get on with it. This was easier when they were little because I was usually physically caring for them, I find this bit harder now because I'm not physically supporting them and feel a little useless.
It's hard being the parent but just know that being there for your dd is such a support.

@CoffeeBeansGalore @Redambergreenforgo

thank you for sharing your stories, and hearing your perspective from the ‘other side’ is so helpful. Being the person who just listens can make me feel so helpless, and I also worry about ‘feeding’ her unhappiness if that makes sense. I guess it’s a balance between listening and then being positive about other things in life too.

@Scarletpetunias It honestly sounds like you are doing a brilliant job. As long as your daughter knows she can pick up the phone to you, you are helping. I'm lucky enough to have a friend there for me as well as my husband. It is a huge help.
Do not feel helpless. You are doing great.

Could you send her a little parcel with a few treats in and a card saying how much you love her and how proud of her you are? When I was at uni and struggling that sort of thing really helped.

Great advice from the PP. I just came on to say the same things. I've had a long term illness since the age of 16, I'm 42 now and my mum is still there at the end of the phone. She's amazing although I try not to cry on her anymore.

When I was younger she'd get me little treats which really lifted my spirits at times. Just little things-a bunch of flowers, make up, a new top.

You're doing a great job.

Don’t go down the toxic positivity route. I have a condition a little like this. My family are great at doling out the inspirational quotes and blithe assurances from their position of good health, but get weirdly uncomfortable if I say what a shit time I’m having and don’t act all courageous about it (I don’t do this much at all!).

Ask what you can do to help, health related or otherwise.

You sound like a lovely mum 💐

I think being there for her is honestly the main thing, which you are doing.

If you think she might be interested Jon Kabot Zinn has done a lot of work on mindfulness and managing pain, and there are some online courses built around it.

Has she been seen at a specialist pain clinic? A family member w a long term pain condition was so helped with dialectical behaviour therapy, which in a nutshell acknowledges that it isn't 'okay' to live with pain all the time probably for the rest of your life, yet at the same time, it's important to find ways to live. They can also help to check if she's on the right pain medications.

Thank you all, I’m so glad I posted. I hadn’t thought about some of the mindfulness stuff, I suspect at the moment she needs to get through her current flare up and then give some thought to coping strategies for the future. She is pretty open to that kind of thing though so I’ll keep it in mind.

Just another thought, I know her condition is rare but there might be a support group f

I have a chronic health condition that means I am constantly in pain and I agree with the 1st PP, just continue to be there unfailingly for your daughter because the support that you give will be rare for her but bloody important.

Also, little gifts of chocolate and soft toys will be greatly appreciated by me her 😉

... as I was saying!

There might be a support group for chronic conditions that she could try out (regularly or occasionally). Not all groups suit everyone but it can be comforting to meet other people who get it and where you can be open without feeling a burden or talk freely and be understood without having to explain.

Even if you're all just talking about non-health topics but through the lens of someone managing a long term condition.

If there's a charity for her condition they might have groups or suggestions of organisations that do, or there may be local charities for disabilities generally that have groups. Some are billed as support groups, some might have coffee morning drop-in type sessions.

Oh and if it's Fibro, keep her off the FB support groups ffs, they're mostly pits of despair.