Anxiety

[loopyloo58]

I was diagnosed with SLE 2 years ago and I really feel like I need some therapeutic services to help me understand this condition. I’m extremely anxious because even accessing GP services is difficult. Does anyone else feel anxious and alone and have they overcome those feelings and how?

[Sarah74]

I was diagnosed at 18 and I’m 44

Weirdly I never suffered from anxiety until my late 30’s.

Possibly a combination of things but ultimately I believe it’s due to lupus and meds.

It doesn’t come so often now but seems to be worse around period time and hormones!

I’ve had lots of therapy which has definitely helped. I’ve seen both NHS therapists and paid myself privately. What I would say is that a fully qualified “psychologist” what not benefit to me than a “counsellor”.

Exercise and yoga also help.

[whisperit]

Hello loopylou58

Yes indeedy, it's a massive problem. LupusUK put together an information sheet about this just recently, and it has a lot of good advice. Here it is lupusuk.org.uk/coping-with-...

What do you think you need most to help you cope?

x

[Freckle1000]

Hi loopyloo. I've had SLE for 41 years and have found that my anxiety is a direct result of difficulty accessing Doctors when Ive been unwell. I read an study that was trying to connect how anxiety is connected to the disease and after going through possible biological and medicine reasons - cited the on going trauma and invalidation we cop as being the medical establishments fault. 50 % of us experience years of delays in diagnosis due to this.

So you're absolutely not alone with this dynamic.

I'm from Australia - in the public system. I'm just back from going to emergency and staying a night. While lying half dead and delerious every doctor to a tee - asked have you been anxious lately. I lied and said no - ( why would I 🙄🤔🤐🤬) I'm only sick. I also became slightly assertive pointing out that I'm here because I have a serious illness called SLE. Just my opinion but I think with some Docs thay use our anxiety as fob off because a lot of them dont don't know enough about the illness or are just to lazy.

Would they ask the same question of a bloke who's suffered cancer for 41 years ? No way.

And yes - I'm without councelling help myself. It's a horrible place to be at. But with me these bad patches eventually pass by themselves with time. It's hard not to rheuminate on this stuff - but distracting yourself with good stuff helps.

X

[Serser]

Hello,

This may be if some help-it has a link on it where you can put your postcode in and it will take you to available counselling services in England...

nhs.uk/conditions/stress-an...

If you live in North Wales there is a counselling service you can access called Parabl...

cais.co.uk/services/parabl/

If you live in Scotland, Breathing Space could help...

breathingspace.scot/about-u...

Xxx

[Chanpreet_Walia LUPUS UK]

Hi loopyloo58,

Talking to someone is a great way to help relieve any worries or anxiety that you may have. If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...

You may wish to read our blog article on ‘stress management and relaxation’ here: lupusuk.org.uk/stress-manag...

Have you thought about attending a lupus support group meeting? We have a number of lupus support groups across the country who hold regular meetings, coffee mornings and events. To find a group close to you, click herelupusuk.org.uk/regional-gro...

Please keep us updated, wishing you all the best.