Mental health support for patients with rheumatic diseases - just published

[zoe69]

Very interesting article published today.

phpc.cam.ac.uk/pcu/experts-...

And here's the paper: academic.oup.com/rheumatolo...

[Tbrz]

I took part in this research as I feel in my own experience this is a huge area which is, certainly in my case, not even referenced at all, despite bringing it up. Eventually, you learn to keep quiet and suffer in silence, thinking you are going mad or are making it up, as no one pays any attention. For me the worst part has been the cognitive loss, struggling with reading, I was an avid reader before, now I really struggle and with taking on information, my husband has to double check important letters and appointments as I just can’t seem to fully take them on board. The chronic fatigue has also been an issue and depression is something I know I could be an issue, if I didn’t practice techniques to keep it at bay. So the results of the study do make interesting reading, had to do several attempts 😂- it helps you are not the only one 😊

[zoe69 Moderator Volunteer Vasculitis UK in reply to Tbrz]

I did it too.I advocate for metal health support for all those who get diagnosed with a serious chronic illness.

We are left to navigate in a new life, a new norm on own. This affects us and the people around us.

[Kentish_Man]

I fully identify with the comments that Tbrz has made. I too used to be an avid reader, now I just lose interest after a few lines. I have a stack of magazines waiting to be read, but I know in my heart of hearts that they will never be read.

You do learn to keep quiet and suffer in silence. I feel that I am met with scepticism when I go to see my GP with a new complaint. So I just plod on regardless. Sometimes I feel as if I am the only one, so Health Unlocked helps a little in that respect.

I have tried really hard to read the results of the study, but fail each time.

This reply was typed for me.

[Tbrz in reply to Kentish_Man]

Lol, I buy books which sit beside me virtually unread! In 7 years I’ve only managed to read 3 books and I could read one a day and I was studying for a masters so was reading heavy academic books, now I struggle to read a celebrity magazine!! ☹️- that has been the hardest to accept, but it is so difficult to read I’m rereading the page so many times and then it gives me a migraine and I am exhausted which then gets me upset and feeling useless and then I fret that I’m being stupid and so the cycle goes on ☹️- my brain is just not working like it used to, but I feel so stupid even mentioning it.

[012703060610]

Powerful, thank you for sharing! Also very sad how much support we don't really get! I can say I am fortunate that my Rheumatologist actually talks with my psychiatrist and they determine treatment together. I have a bit of a limited life span window now so I think those that treat me are a bit more empathetic. To get two doctors talking is an essential miracle!

[Varp]

I took part in the survey too.Findings were as expected i think. Hopefully a positive move forward for the many who suffer in silence and hopefully appointments will improve and include the necessary questions to help us all.