Worth a read - a famous autoimmune patient talks

[PMRpro]

I have just been given this link by a member of this community and thought it should be shared further.

thequietus.com/articles/186...

Ane Brun has lupus - but I think her interview about living with it and the role of fear and stress is very interesting and inspiring for all of us.

[DorsetLady PMRGCAuk volunteer]

Hi,

You are so right, it is inspiring. And she is correct in talking about coming to terms with her disorder - once you do that's it's the most empowering feeling. Even though you can't control the illness per se, you can control your attitude to it rather than let it control you.

We've all lost something to our condition, whether that be freedom of movement, ability to undertake certain tasks when you'd like to, time with friends or family when you're just too tired to do anything or even more significantly - like partial or full sight loss. However we have not lost our ability to choose how to deal with GCA or PMR.

For me, it was accepting what had happened, acknowledging I had a long term condition, not fearing what may happen (waste of time worrying about future, what happens happens, you then deal with it), living each day as it came (hoping tomorrow would be better), not pressurising myself to be superwoman, not feeling too sorry for myself (not always easy, but there are many in a more difficult situation) - but most of all keeping a sense of humour (very often black, but always slightly ridiculous).

Actually looking back, it's very similar to coping with bereavement. With a long term illness you are grieving the loss of your previous life, with death it's the loss of a loved one and obviously much more difficult, but the coping mechanisms are transferable. Got the T-shirt! But moving on every day.

[Hidden in reply to DorsetLady]

Exactly how i feel nowadays. I think acceptance is the key.

Thank you for your wise words.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Good. Yes acceptance is the key, and very often the most difficult step. Good luck.

[Hidden]

Thank you😊

[Hidden]

Thanks for that PMRpro

It makes PMR/GCA look like a bus ride. Even though we suffer, there are so many other conditions/illnesses that we as humans suffer from that I am always grateful that I can carry on with some resemblance of normality whatever that may be.

[PMRpro Ambassador in reply to Hidden]

Honestly - an hour or two spent browsing the vasculitis or lupus forms is enough to make PMR look a positive health cure! Above all because there you find young patients, often teens and twenties, and with life-threatening organ damage. We, at least most of us, have had a decent life first and PMR doesn't kill.

[Hidden in reply to PMRpro]

I can only agree