What emotional support have you had, if any?

From my experience the emotional aspect of serious chronic illness is often forgotten by the medical profession, despite how drastically it can effect a person's relationships, lifestyle and prospects. I was wondering what kind of support, if anything, have people received/been offered by medical practioners to help you adjust to life with lupus?

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  • Hi Porridge - good question by the way - I was offered six sessions on one to one counselling provided by my GP surgery when the decision was made for me to finish work when aged 44. This was something that I found difficult to come to terms with as I loved my job and had worked hard to succeed in my career, but more importantly I felt that I'd lost my identity when I finished work.

    Suffice to say the counselling helped 'at the time' but really it only scratched the surface of the myriad of feelings that come with living with a chronic illness. I don't mean to sound ungrateful as I know it's more than other people have been offered, it's more to explain the extreme difficulties I have with accepting that I'm longer a professional and cannot earn, learn and enjoy working hard anymore.

    Have you had support?

  • Thanks for your thoughtful reply, Slowmo. To be honest I was not offered anything. At the time of my diagnosis I was a teenager in school and was lucky to have a strong support network of family and an understanding school. Now a few years after leaving I no longer have that network and I can see the toll my illness has had on my relationships and my overall quality of life.

  • This forum provides great support.

  • Hi Porridge

    Lovely name you've chosen!. The psychological side of having a long- term chronic illness is something that the NHS is lacking in providing help for. I needed help a few years ago and there was nothing available. I hope you get the help you need , this forum is great as we don't feel so alone , helping each other with our experiences. X

  • it sure does I read the post every day it's as thou it's my Theropy and helps me through the day especially when people see you siting on your scooter and say you look well if they seen me try to get off that would be a different story x

  • Hi this is a good question. When I was first diagnosed I was 34 that was that was 23 yrs ago after 6 yrs of knowing something was wrong. I was just told what it was and that was that as if it was a cold. I had to give up work at 50 and found it so hard I loved working but it came down to work or live basically. No counciling was offered and never has. No one seems to understand that some days I simply find it hard to cope. I do cope because that's the person I am but it's hard and we should be allowed the odd day of feeling sorry for ourselves. I always get comments well it's your age or I feel like that. Think I came from an age when you just got on with it but I often wish I didn't. The worst is when you have managed to do things and other people say well you've got the time. Just no understanding. Wish there was somewhere I could go and just talk about how I feel with out it seeming like I moan. Hugs to everyone and have a good day. X

  • I don't have lupus (systemic scleroderma) but my chronic illness (sounds weird to say - only just diagnosed) has a strong link with stress as an accelerant so I asked my GP for some CBT to give me some skills to cope with stresses in life and she agreed 100% and I have that now booked (preemptive) and then she suggested therapy too to cope with the disease and the uncertainty around it more specifically and coping with family and friends with it. I guess sometimes you have to ask, but I think I've been quite lucky. as I understand it, the gov has recently invested money into mental support so perhaps now is the time to ask :)

  • Hello I'm new here, I feel a bit of a fraud as I have RA rather than lupus, tho that was suspected when I was taken off anitnfs. But a recommendation, try meditation, specifically mindfulness. There are exercises to work through on the Oxford mindfulness website which is very reputable. It helps you to focus on the here and now and also is a good stress buster.

  • Hi I was diagnosed with sle in 2004 received no support in fact quite the reverse did manage to find a support group reumi told me to stop work with immediate effect 1 year ago absolutely without any kind of backup last week department for work and pensions stoped my sea saying I was fit for work without impediment so plenty support Thier then wish you all well g

  • Hello Porridge. I was diagnosed in November 2013 and haven't been offered any counselling. In the last 18 months, I have lost my Grandpy, my stepfather and my Dad, had a hip operation and then the diagnosis. I have just tried to get on with it for my husband's and three kid's sake but it isn't easy. I am 39 and have always had loads of energy and worked hard. I thought I was picking up, 6 months of meds in but the photosensitivity is now a major problem and I feel I am going backwards again. I find this site very helpful and my life line really. I read the posts every day. I do have good friends but I already feel like they don't really want to hear about my health. My husband is great and says tell me everything but that's not good for him or me! Sorry, I have gone on and on. How old are you Porridge? I'm guessing young if you only left school a few years ago.

  • Hi Porridge

    Funny that you've asked this question as I asked my GP for counselling on Friday.

    I have been trained in CBT but with children, there is a difference in the approach. However I have applied some of the principles but know there are deeper issues that need addressing......

    Slowmo hit the nail on the head, losing the ability to have a profession and use or add to the knowledge you've worked years to aquire, is hard to come to terms with. Add all the elements and complications, that go with this lovely condition and you're riding a never ending emotional rollercoaster...... that's before all the trials and tribulations life throws at you along the way.

    If it's any help, I don't think of the future.

    I'm lucky, in as much as my children have flown the nest and there's only me. I live day by day, try not to waste time on the past...it's gone....I can't change it no matter how much I want to. Yep there are issues but I'll face them and move on.....hopefully.

    I've learned to be self contained....I do what I want .....sometimes I'm able to do things, other times I'll sit in my wheelchair or stay in bed with pills and potions as a bedmate....

    I set little targets, I know we're all different and I'm not preaching, but it works for me.......

    Gentle hugs to all.....

  • Hi Porridge - I was given no help/counselling when I was diagnosed with SLE. It was only when I moved from the rheumy dept in the hospital to the renal department that this changed. Renal have a wonderful counselling service and I've been supported fully. Shame the rheumy department didn't do likewise as I needed a lot of help and support both when I was diagnosed and throughout my Lupus journey.

  • I used to be able to attend a support group run by my LHA and nothing to do with my GP, per se. It helped a lot. However, GP since decided not to allow further or re-referrals as it costs the practice too much. Instead he arranged for me to see an in-house counsellor whose first words were "Gee, you've needed quite a lot of medical care over the years ... why is that?" Seriously! Needless to say I didn't bother seeing him again as he wasn't at all interested in helping me ... just some kind of really inapproprate vilification.

  • hello porridge,

    I wasn't offered any support or advice on lupus by my rhuemmy or GP. ive found this site to be a wonderful help as I can ask anything and have real answers from buddies who truly understand x

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