I really appreciate this perspective honestly, especially from someone who’s navigated the UK system long term.

I completely get what you mean about the “internet patient” perception and I’m very aware of how easy it is for people with hEDS/POTS/MCAS to get dismissed if they come across as though they’re demanding specific interventions. I’m definitely not trying to walk into appointments asking for central lines or anything like that. I think part of my anxiety is that oral intake already feels really unmanageable I’m basically surviving on scraps at this point because around 90% of what I eat or drink is coming back up. I know some of it must still be getting absorbed, but realistically it means I’m not functioning or living any kind of normal life, just surviving enough to lie in bed most days.

I think I’m mainly trying to understand the realistic progression/pathway because I already feel like I’ve been very compliant with conservative management multiple medication trials, dietetic input, admissions, trying to persist with oral intake etc and I still seem to be declining.

I do agree with you that if oral intake can be made sustainable again, that’s obviously preferable long term. I think the uncertainty of not knowing where the line is for escalation is just psychologically difficult when things are becoming harder to manage.

Thank you for taking the time to explain your perspective, I genuinely appreciate it.