AIBU to ask friends for support during severe health flare-ups?

I agree that it is an important part of life and that we have lost something now that we don’t live like this for the most part anymore.

I just wanted to mention a couple of other things. I picked up on the fact that you have said that you hide your pain. I don’t know what this entails, but I did wonder if or how this is helping or hindering you when you are trying to get what you need. I also wondered if you have explicitly asked your parents or your partner for what you need. I know you want to be soothed and almost parented, but if the people around you are struggling with that, might they respond better with more direct instructions? I think it is okay to ask for a cup of tea for example. I’d be surprised if your parents or partner refused a simple and straightforward request.

Why is your parents' cultural norm so different to yours?

You've said they're burnt out from all the support they give you, are you sure you're as caring and soothing as you think you are?

You may find that people are more willing to dig deep when they know there's an end goal. It might not be the cure all, but ultimately it might be.

Asking people to help out with childcare, food deliveries etc is totally reasonable.

Expecting friends to drop everything, mop your brow and provide tea and sympathy is not reasonable.

You are a big girl, you don’t NEED reminding to take your meds, drink fluids etc. It sounds very much like you feel neglected in general but 100x worse when you are feeling vulnerable. You have parents that do an awful lot for you but can’t seem to recognise it. They are running your home and caring for your children and you are complaining they are not giving you enough attention. Have you been assessed for depression?

While you are well, you need to figure out ways to help yourself. Have a box of everything you need (bottled water/painkillers etc) stored in the bedroom, set yourself an alarm schedule for every 4 hours so you remember to take your pain killers. Find things that help you self soothe- white noise, controlled breathing, meditation, music etc. If you are wailing so loudly the neighbours can hear then you need to seek further treatment. Join some online support groups with people who understand Endo and can help you find ways to cope and alternative treatments.

I do feel sorry for you, no woman should have to suffer this level of pain. However, you can’t expect family and friends to come and do a bedside vigil.

Sorry OP im going to join the majority of posters here and say absolutely not.
I would help with practical things if you needed it but honestly soothe you? Thats weird and actually I think youre LUCKY you have parents who ARE caring for you by coming over and looking after your kids, sorting the house out etc.
Frankly even my partner I wouldnt sit mopping his fevered brow if he were unwell. Id get him a drink, bring his meds, if he wasnt able to get himself washed or dressed id help with that but I wouldnt BABY him and I wouldn't expect anyone to do thay for me either.
I think what yiu seem to be wanting is what id do for someone who was in mental crisis maybe or even dying. Sorry.

"Hi, as you may know I have a chronic health condition which is mainly in remission but occasionally leaves me in excruciating pain. I'm working on this - both trying to reduce triggers and finding medicine that works. In the meantime, when I am in a flare, I need someone to come over and take charge...tell me to rest, recuperate, reassure me I'll be okay, make me take meds and drink water etc. Would you be able to be one on a list of people I can text SOS to if I'm in that position?"
No, you can't ask people to register to your SOS visitation list.

You're essentially asking your family and friends to drop their own family life and commitments at random times, come to your house immediately and spend their time telling you to rest, take your medicine and give you assurance. This can be done over the phone, why do they need to come to you? No one is going to be willing to do this.

You say you're separated from your partner who's useless - and it shows. It sounds like you're trying to make your entire social circle a substitute for your partner.

There's nothing wrong with calling or texting family or friends when you don't feel well, but to expect them to regularly drop everything at random times to come stroke your hair is unreasonable.

I think it would be very wise to have a list prepared for when you see the GP.

You need:
better medication now, naproxen is not enough
possibly a referral to a pain management/ Endo clinic
mental health assessment and possible anxiety/antidepressant meds

If you can get yourself in a better place you might find it easier to communicate better and your partner might find it easier to assist you. Crying for attention is making him avoid you as he knows that nothing he can do will make you better. You need professional help to get you to a position where you can cope. Best of luck

I am very uncomfortable with the ‘soothe’ bit.

Right now, I have kids who need me to do many practical things for them, and for whom I physically and emotionally care and support. Then there are my parents , who are getting older, frailer and that I need to support and care for and do many things for. I have a marriage to put work into, a job to do, lack of money to worry about, a home to try and look after and no time left to even make basic care appointments- like optician or dr- for myself. Oh, and a long term health condition to manage.
I am physically and emotionally exhausted. And the thing is, that probably loads of us on here are the same. There’s nothing in the least extraordinary about my life.
But when we try to describe it we say we’re busy/adulting/have enough to do with our own families- and it must sound cold and uncaring. It honestly isn’t, and I too would happily do practical things to help you out (school run, sort dinner, prescription or grocery run etc)
But to be a regular part of a ‘support team’ and soothe and hand over pain pills is a stretch.

edit for typos

I’m not from Britain either (I’m from a very social/hands on family culture) and still the way you’ve asked for it/seem to want to ask for it comes across very intense.

If you’re in intense pain for prolonged periods there’s very little others can do and just sitting there looking at you while you’re in pain won’t solve anything. Plus as they’re not healthcare providers, you can’t really put on them the expectation of soothing you through it. People can be very uncomfortable with pain, it’s common.

I live with someone with a chronic illness and often hear them cry in the shower. It’s very distressing, especially knowing there’s nothing I can do, plus I’m damned if I do and damned if I don’t because the pain causes very snappy reactions.

If you think it’s feasible for you I’d probably just check into a hotel (as you’ve mentioned before) so that no one can pester you with interruptions.

The therapist has been a bit short sighted. If your DH can't cope with his own child, home and supporting you how would your friends be able to. They will also have their own responsibilities to juggle and could find the extra demands overwhelming.

Yeah considering your updates I think you need a new counsellor as well as a new DH!

could you perhaps partner up with someone else who has endometriosis and support each other in this way? Maybe you would have a good understanding of what each other need and could support each other with phone calls?

What did your therapist actually suggest? Seeing your friends regularly to have fun and build social interactions? That’s fine.

If she has actually suggested texting lots of friends a generic message asking them to be in a pool of people prepared to pitch up and remind you to drink and to mop your brow then I think she’s giving some seriously shite advice.

OP I mean this with genuine kindness, but this request is crazy. Debilitating pain is absolutely awful, and I wonder if perhaps you need to work on the impact it's having on your mental health. I absolutely hate to use the words "resilient" as I think it conjours up all sorts of misoginisc biases especially in a condition regarding women's health, however you seem to lack any real perspective at the moment, and I really think for the sake of your mental health this needs to be worked on. Your parents are helping in the way they feel able, and whilst not perfect it's much more than nothing. If your partner can't provide the nurturing side you need, then that's something you either have to accept or change your circumstances regarding his position in your life.
Its OK to reach out to friends and offload how you are really struggling and just how shitty you feel, but it's just not appropriate to ask for that type of input from people, and "wallowing" is just counter productive and unhealthy.

I absolutely sympathise and I really really don't want to sound harsh in any way, I just can't think of how else to phrase it, because I genuinely think you will feel better emotionally at least if you snap out of this mindset.... It's just not doing you any good at all, and in chronic pain the impact of mental health is significant.

So what you're really saying is 'my partner is selfish and useless, but rather than getting rid of him, I'm asking all of you to step up in his place'?

You keep switching between calling him your partner/husband then saying you're not together?

Anyway, I have massive sympathy for your pain, I have friends with endo and I find the lack of understanding and medical support absolutely shocking. I still don't think you can send a group message out asking your friends to be there to mother you when you send out an SOS. That's a lot of pressure.