Asking an acquaintance with ME/CFS whether she was assessed for orthostatic intolerance

[kushami]

A family acquaintance (my dad’s partner’s daughter) was diagnosed with ME/CFS a few years ago, went to a specialist clinic, and improved somewhat with medication (possibly a stimulant). She is still not very well, works part time, and I believe is exhausted when she gets home and on her days off.

I wondered whether there is a way to ask her whether she was ever assessed for orthostatic intolerance without coming across as an interfering “Have you tried yoga” busybody.

It would actually be my dad mentioning it to her mum (who went to appointments with her as she was diagnosed when fairly young and apparently has a good memory for details).

I don’t see either of them in person because I am housebound.

Any suggestions?

 

[kushami]

Reason for wanting to mention this to her is that lots of people don’t get assessed for orthostatic intolerance, and maybe there are some simple things she doesn’t know about that can help her, e.g. compression leggings, extra salt and fluids, or maybe even medications she could try.

I suffered for 15 years with OI not knowing what it was despite seeing many doctors, so it’s quite possible she doesn’t know about it either.

 

[Zebra]

Hi, @kushami

I can tell from your post that you are trying to be helpful, and if you suggested this to me, I would receive it in the spirit you intended.

Could your father say something like, My daughter/son was diagnosed with Orthostatic Intolerance, and although there's no cure, there are a few things that improve their quality of life. It made me wonder if (name) has ever considered OI or been tested for OI?

Obviously not verbatim, but when I'm trying to offer help to someone from my lived experience, I usually begin with my experience first then ask if the other person can relate, has thought of, would be interested in, etc.

Again, not claiming to be an expert in interpersonal skills, but wondering if that approach would work in this situation.

I think it's lovely of you to take an interest in this person's state of health and try to offer assistance.

 

[andyguitar]

Could your father say something like, My daughter/son was diagnosed with Orthostatic Intolerance, and although there's no cure, there are a few things that improve their quality of life. It made me wonder if (name) has ever considered OI or been tested for OI?

I second that!

 

[cfs since 1998]

I am starting to think everyone with CCC ME/CFS has orthostatic intolerance. I think it's closely linked to the mechanism that causes PEM.

 

[southwestforests]

I don't know what to say for someone else because as you know I'm autistic and like communication to be clear and direct.

And then immediately after saying that ...

And maybe partly because I do some writing and have to think how characters of various mindsets think,

An idea comes to mind how to suggest without sounding either pushy or like a yoga evangelist,

"There are some people who turn out to have both ME/CFS and Orthostatic Intolerance, and some of them have found that things which help the OI turned out to help some with the ME/CFS. Might be worth looking in to. Ya never know."