Diagnosis and coping

Hi All,

Since my last post I have had yet more bloods, x-rays and ultrasounds. Finally I have a diagnosis of Lupus and I can begin to try and find a way to cope with this. That is the problem though - I simply don't know how to. i am so exhausted and my job is very stressful that I can't see a way of getting my life together enough to function properly!

Has anyone else felt like this? I feel like I am loosing my mind!

Love Cass

5 Replies

  • Hiya Cass, I guess like many others you have had many health problems before being diagnosed so in some way it is likely to be a relief to know what is wrong with you.

    However, coming to terms with a diagnosis is often a difficult time for many people. My GP offered a 6 wk counselling/CBT course to help me to come to terms with the diagnosis and the implications of having a chronic illness. Maybe this would be available to you if you asked for help. Occupational health may be able to help with work matters and offer support on how best to manage your role with your health condition. If you are so exhausted it may be necessary to re-evaluate and look at making some changes at least until you are stable on medication and get your head around the diagnosis.

    You are not alone, many of us experience the same feelings you have which can be overwhelming at times. Use tihs forum to air your concerns and grievances and maybe request an info pack from head office.

    Take care and keep us informed.


  • Hi Cass

    It is a shock to get a diagnosis, even if you have had an inkling for some time. As well as feeling relieved that you have a proper reason for feeling unwell, there is a contradiction that you don't really want it to be lupus.

    I think we all have had mixed emotions when we are first told. I can only tell you how I managed to get through the turmoil.

    Firstly, get as much up to date information as you can. Do not be alarmed at stories of extreme illness. Most of us have our symptoms under control, (allowing for the odd flare up)

    Learn to pace yourself, at home and at work. The housework will still be there tomorrow. On bad days I would clean the loo, the bathroom sink and the kitchen sink and worktops and that would be it.

    You are likely to be monitored closely at first to see if your medications are suitable for you, tell the doctor if you are struggling with pain.

    I found lupus books and leaflets to be really useful as there was a physical thing I could refer to time and again, also to show family and friends about why you are unable to do this or that.

    Do not feel guilty or apologise for being unwell, you did not ask for this condition and you are doing your best to cope. Have faith in yourself.

    Hope this helps.

  • Hi Cass

    I can only echo what Slowmo and Bluebell99 have said.

    I have just been diagnosed and everything is still a bit of a blur but one thing I am grateful for is this site, the level of support from people on here is amazing.

    I know what you are going through at the moment as I am exeriencing much the same. I am reading as much as I can and exploring the complimentary side (diet etc).

    When in feeling beat I come on here, read some of the posts and realise I'm not alone - things don't seem so bad then

    Take care and stay positive xx

  • Hi All

    Thank you for replying and sorry for my delay - I have been battling with my internet at home - not helping with my stress levels at all. I am happy that I finally have a name for what's wrong with me and I am not just going crazy, which is how I felt for many years. The worst thing for me is trying to get my head around having this forever. As I have been dealing with feeling like this for 10 + years I am used to living my life, but it has got worse of late, so hopefully my medication will start working soon. I am just struggling with the idea of it not ending! I am a very practical person who doesn't like to ask for help ad I know now that I may have to in the future - this is hard for me.

    Thank you for the great ideas and I will definitely be looking into my diet and seeing if CBT would benefit me.

    Thanks all and hope you are well at the moment.


  • Hi Cass, sorry to hear you have been struggling emotionally with this. I think with lupus we are all on our own journey in terms of when we come to full acceptance. When it's bad it is really horrid and the uncertainty of what each day brings is also a difficult concept. However, when we are on the right meds it can help a lot. I find taking each day as it comes (not always easy) helps me.....then when I have a good day it almost becomes a mini celebration of achievement. On these days I am so thankful that I have been given a reprieve. I hold onto these days in my mind too as it shows me there is lots to look forward to. I also have been practising meditation too and this helps bring me mindfulness which in turn stops me from worrying. I wish you lots of internal strength to help you cope with this. Take care xx

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