How many of you attend support groups for lupus? Are they run by your hospitals or a branch of Lupus UK?

I have posted here before trying to reach out to others in my area, under the Hywel Dda Health Board but no one replied.

I live in Pembrokeshire, South West Wales.

I have had the pleasure of meeting Maggielee via this site and we meet for a catch up whenever we can.

I recently asked the South Wales branch of Lupus UK if there was a support group local to me and there isn't.

They suggested I might be interested in starting one.

I am becoming more and more passionate about raising awareness of this awful chronic illness and wanting to help and support each other but I have quite bad fatigue that isn't improving and 3 children to juggle.

Rather than start a branch, I would be interested in just a more informal support group. More social rather than obligations of a committee etc.

So curious if any of you attend meetings in your area and who runs them?

Or do you all just come to this online group for your advice and support?

I'm guessing I would need to put a poster in my local Rheumy department waiting room to find others with lupus in my area, as no one replied here.

Thanks.

21 Replies

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  • Hi Wendy39,

    If you were interested in working with the South Wales Lupus Group you would have no obligation for your meetings to have a formal structure or a committee. Most of our groups are based around one (or a few) people organising informal meetings like coffee & chats. If you wanted to start one, if you are able to find a suitable venue the South Wales group could contact all of the current LUPUS UK members in that area to invite them to an initial meeting. We could also post about it on our social media platforms and on here. You could also put up a poster in your local rheumatology department.

    Most support groups around the UK are organised by volunteers for LUPUS UK, whether they are part of one of our larger Regional Groups, or a single area coordinator. Some rheumatology departments do also run groups, or are closely linked to groups.

  • Hi Wendy

    I don't go to any support groups as like you my fatigue is overwhelming most of the time (and I don't have young children at home like you so I take my hat off to youπŸ‘ πŸ‘πŸ‘ ). Other than struggling to get to appointments which I seem to have a constant stream off at the moment, planning is pretty much impossible for now, so I tend to stick with this wonderful forum and figure out what I can do each day on the day! Oow Lupus makes for such an exciting life! 😫

    I think you'd have to have the time and energy and feel relatively well to manage an official support group wouldn't you? I think the more social informal coffee and chat get together sounds really nice and perhaps more manageable especially if you're not feeling so great yourself. I'm sure your local rheumy department would be happy for you to do that, I think it's an excellent idea πŸ‘πŸΌ

    Diane🌸Xx

  • Hi Wendy

    6 years ago, when I suddenly discovered I'd had lupus for 50 + years, I immediately went online, found Lupus UK and phoned the chair of our local LUK support group. I was ultra poorly at the time, v emotional and anxious, but she was simply LOVELY. Without putting any pressure on me, she urged me to come to one of their regular coffee mornings, which are held at a big garden centre in the cafe. I was too frail & fatigued, zombie-like & in pain to drive, but my husband took me & looked around the place while I spent an hour or so with everyone in the cafe...which was about all I could handle while feeling so unwell. I am so glad I went: the welcome & good company helped me feel much less alone & adrift & confused & anxious.

    After that first visit I wanted to attend the coffee mornings more often, but wasn't strong enough to manage more than, say 1 or 2 each year. I did, though, enjoy receiving our seasonal local group newsletter & even writing articles for it! Also, I managed to attend our big information day events...and our AGM (there is always a great buzz + the speakers are always really interesting)

    Meanwhile, this wonderful forum has been my daily point of contact...despite feeling better in many ways, am semi-housebound which makes forum extra precious to me...it's been several years, now, since I've managed to get to a coffee morning...but even so I feel that my local group is as much my family of friends as this forum is

    My Rheumatology lupus clinic also hosts events e.g. Seminars. Over the past 6 years since my infant onset lupus diagnosis was recovered I've attended 1 or 2 of these and benefitted greatly

    Every day I'm grateful to you all and to Lupus UK: you are my Lifeline! My LUK local support group gatherings + events + newsletter + big events & the LUK forum + magasine all mean that for the first time of my lifelong lupus I have a sense of belonging ....I actually feel connected & grounded...which is GRRRRREAT

    So, I think your idea to locally host informal gatherings sounds grrrreat: wish I could come along

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • I wish you could too! Thank you. X

  • Aww wow I have just read your reply and after been very emotional I feel you could of written that for me so thankyou ,and it is so good to know there are people like me who feel the same pain and fatigue that I do that "normal" people don't understand ! I wish we had a group I could attend but if I'm honest we might have I just haven't had the energy or the will to find out ! I too find this forum my lifeline after feeling like a newey well diagnosed July 2015 I now think of you all as my friends , counsellors and support - so I thank you all πŸ€—πŸ€—πŸ€—

  • It's great we have each other & Lupus UK! Take care JLT πŸ€πŸ˜˜πŸ€πŸ˜˜

  • I'm interested in this idea also, if anyone near Leeds would like to meet up informally

  • Hi Wendy, sounds like a good plan and with lupus UK's support to inform other members we may find a few more folks that are in our area. The last I saw a posting for a group was 2014 they met at the Angel in Narbeth and then it went quiet, I was too poorly to go and they seen to have never met again. Can give it a try.

    By the by had a strange conversation with rhemuie nurse today, bloods seem fine, but no results from blood tests sent to Llanelli (don't know what they are) and Dr. B is coming up with a plan???? Writing to gp and me with the plan....love the lingo they use. Something about an xray of my spine to ensure I don't get fractures !!. well that won't help me sleep tonight 😱😱😱. We could write a book on some of this medical conversations....😡 ml PS got ta laugh.....

  • PS was at work so I had to watch what I said....ml

  • Hi, My area has never offered any support groups. I have even asked my GP if there are other Lupus sufferers (a five practice group) that he could put the word out an I would coordinate. But no luck. Sorry I'm not in your area.

  • Hi johare,

    What area do you live in?

  • Benfleet Essex

  • Our nearest group at the moment would be the Romford Coffee & Chat group which meets monthly. I believe that Basildon rheumatology dept were starting support group meetings for people with lupus, but I'm not sure whether they are still running unfortunately.

    If you wanted to try and organise a meeting we could inform any members we have in the area and share the details through our social media networks?

  • That would be great. At the moment I meet with two ladies as and when and another has recently contacted me that I can introduce. Getting this started in the summer may be nice. Thanks Paul.

  • What a shame! We are all so spread out. Would be lovely to meet everyone. x

  • Just private messaged you I live not far from you

  • Chaimee, did you mean you were close to johare or me? I'm guessing Johare as I never got a message from you. Just wanted to check. X

  • Yes live near Johare

  • OK. Thanks. x

  • Try other short groups that cover a variety of different chronic disorders like Arthritis uk , healthunlocked where people can direct you to other useful groups Sounds like a film studio getting directed .Hope this helps Sometimes just reading and replying to fellow sufferers means you keep up to date with other people with the same or other chronic illnesses

    Jeanat not overthehill

    Lupus.uk is my favourite site

  • Thank you for your reply. I use this site frequently already and have posted myself, since my diagnosis in 2013, a lot! It does help a huge amount. I have fantastic support here and have made friends. But recently struggling to get my medical team sorted out, things like I'm seeing a GP with a specialist interest in skin as opposed to a Consultant Dermatologist. There must be other lupus sufferers in my area who are experiencing similar issues. Would be helpful to try to meet, as maybe by uniting forces we could make more of a change. And support each other along the way. Thanks again. Wendy

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