lupus support

[Chicky12]

I’ve had SLE since 1994 and have been ‘in remission for a long time. I’m now getting symptoms but my bloods are normal. I have felt ‘different’ ever since my diagnosis where I was very ill and the SLE had attacked my major organs. I’m lucky to be here and now work part time as a radiographer. I do not feel as if my GP understands me and after 30 years of having the illness have finally been referred to rheumatology. However it’s an 8month wait and I don’t fit into the urgent category. I’m struggling, with fatigue, aches and pains and now burning mouth. This is affecting my mental health which has always been a bit iffy. However I am trying to stay positive and have some coping strategies. I just want some support.

[lupus-support1 Administrator]

Welcome! Truly sorry to read your story, but alas, it is very familiar and very common. One would expect that as a health care employee, there would be some degree of sympathy. My best recommendation on the NHS would be Professor David D'Cruz at At Thomas' Hospital - the waiting list is obscene.

This shouldn't be necessary, but some see him privately at The London Bridge Hospital. He was taught by Dr Graham RV Hughes and he was the only one, some 15 years ago, who caught a significant problem for me, so I recommend him.

I also recommend psychological support: everyone needs it!

Please post or DM me here at any time.

Do you have friends and family you can also talk to? Sometimes we need someone unconnected.

With good wishes,

Ros

[Chicky12 in reply to lupus-support1]

Thank you Ros, yes I’ve had CBT and I am now seeing a person centred counsellor who is lovely and has suggested I reach out to this forum. 😎 I just feel a bit alone on this as I don’t know anyone with the illness who I can talk to. My friends and family try but they really don’t understand and I feel guilty telling them how I feel because they have their own worries. I will wait for the local rheumatology department to get back to me but I do appreciate you giving me the name of such an expert. Thanks again.

[lupus-support1 Administrator in reply to Chicky12]

Any time . . .