SLE support groups

[artemis5]

Hi there,

It's my first blog post so I will just start from saying hello to my fellow SLE sufferers!

I've had lupus symptoms for about 10 years now but was diagnosed around 6 years ago. It was quite mild at first but recently I's been getting progressively worse, despite the therapy.

So let's get to the topic. SLE support groups. Since I found out I had lupus I started searching for information on the topic and for people who are going through the same stuff as I am. I stumbled across several support groups and I have to admit I have mostly been very disappointed by them. Why? Becasue they are soooo depressing!! First, it seems that all they are offering is just basic information about the subject, no more than you can get from wikipedia website. This might be enough for people who have no idea about SLE, but come on, most of us already know A LOT! Okay, but that's just a minor thing.

Second thing, I keep hearing all these sympathetic words: I know how you feel, I know it's tough, people don't understand, obviously you are in much pain. Yes, okay. SOmetimes we need a shoulder to cry on, but most of the time we need someone to say THAT'S ENOUGH. Pick yourself up, get off the couch and do something that will make you feel better. And that's what a support group should offer. It should make you feel stronger despite of your fatigue and despite of all the crap you are going through. And you don't do that by patting people on the head and saying that we all know how bad you feel. We are what we are and we have to find ways to deal with that.

ohh.. and bake sales will not help too... I know many of us are very fond of that too, but if that's all the support group can offer to us than no wonder even in big cities the groups don't count more than 10-20 people in total. I'd love to start up a group with active, optimistic SLE people that could offer much more than what currently is avaliable. And also reach out to more diverse groups, young people, women trying to get pregnant (that can be really scary for all SLE mums-to-be), parents and everyone else there. But it just seems impossible as it seems that these groups are made by people who have known each other for ages and have their own routines and habits and don't seem to be able to look past that.

Okay, a bit controversial?

Discuss

[Melinda]

I don't personally know anyone else who has lupus apart from my late sister who didn't know she had it till she took ill, and an uncle i rarely see. The only people i know who have it are the people on this site.

I have never been to a support group, although i believe there is one in my area. I do hope one day to meet other people who have lupus.

I visit this site mainly for information and support. I also like to know about alternatives to pharmaceuticul drugs. I certainly wouldn't regard myself as a negative person as i live in hope of a cure.

[Alexandria in reply to Melinda]

I live in Kettering and run a small support group (see my comment below) would this be too far for you to travel to ?

[Melinda in reply to Alexandria]

I live about nine miles from Kettering. No it wouldn't be too far to travel.

[grannyjogger]

Controversial? Maybe. But that's the good thing about forums like this, we get to say what we feel. People with Lupus and other related conditions have a disease in common but we are as diverse as the symptoms we experience. Some people will be angry, scared, depressed, others will have found different ways of coping. Some follow the rules like resting when you're exhausted, some say 'what the hell' ignore the rules and put up with the consequences.

I was talking recently to someone I hadn't seen for ages and told them about my referral to the rheumie and possible Lupus (not had a definite diagnosis yet). The person said they had a colleague with Lupus who was always complaining that they had something wrong with their health!!! I think that sums up the attitude of people outside the Lupus community - a total lack of understanding of what it's like to live with these conditions.

So maybe the forum gives people a much needed opportunity to say how rough they feel and get a bit of sympathy. But I take your point that sometimes we need a bit of encouragement to fight back and I totally understand the 'Pick yourself up, get off the couch and do something that will make you feel better' bit. I did the Cancer Research 5k Race for Life last month - unfortunately was having a flare and can't really describe how hard it was. But I know that I would have felt 10 times worse if I had backed out because so many people who are/were dear to me have had to fight the fight against cancer. I chose to do something I wasn't physically fit to do, it was horrendous......but, boy did I feel good inside afterwards.

[artemis5]

Melinda, Grannyjogger,

Thanks for replies. I know that this forum is for people who have questions about their sickness and therapy or just want to vent or chat about everyday issues. That's okay with me. But would it not be nice to actually have a "real-life" support group (as in not just online society) who can provide all the information and support you in the ways that the doctors usually don't.

I accidentaly met some people from my local support group recently. While waiting for a doctor's appointment actually. So I come to see my rheumy, all happy and delighted that I will get an update on my blood tests and therapy and here comes this person asking me how I'm coping with my disease. And then she says to me that she knows it's very tough and noone understands the suffering and pain and that things get even worse in time. Then two others join in the conversation and start agreeing on hard hard their life is and how the disease gets so bad with time. ANd I'm like: 'Whaaat? Are you trying to make me feel worse?' I mean, you are supposed to support us, help us feel better, hopeful and motivated to fight the disease and not tell us that we are doomed and from now on we will just suffer more and more! I came to see my doctor hopeful he will help me and now I feel like there is nothing me or him can do!

Sooooo, my point is, if people want to give support then please do it in encouraging way... or not at all...

I'm quite curious what are the experiences of other people who met some of the support group members..

[Maureenpearl]

My friends are always asking me if I join a support group and why not but I always answer that I would never join as I don't want to be with people who are always moaning about their condition. I feel it would make me feel worse.

Yes it is good to come together and support each other with advice regarding how to cope, finance, work getting the right information from our health service provider etc.

[artemis5 in reply to Maureenpearl]

That's exactly the impression I got about many support groups. People just gather up to complain about their symptoms... that's just no healthy!

[Davidj]

As a SLE male lupus suffer , it was difficult to find a support group for men or that included men. That's why I decided to start my own. With the help & training of Lupus foundation of America . This will include male & female , no one will be turned away. Although I was never turned away. Always made to feel incomfortble because it is mostly a female desease. Not sure where you are , I will be providing a toll free # where people who can't get to a meeting are encouraged to dial in. I think your comments are enlightening and will keep them in mind when facilitating these meetings. Positive positive positive is what we need. But sympathetic. To what we go thru. All we want is someone to say is "me too" hence the title of my book if its ever completed! Lol .

Positive thoughts n prayers

David from Florida

Ps- remember. Mengetlupustoo ( mengetlupustoo.com ) will be ready anyday now

[artemis5 in reply to Davidj]

That's a great idea. Good luck! Florida is a bit too far away since I live in UK, but I will certainly check out the website.

[fabwheelie]

I consider myself lucky as we have a very active local Lupus UK group in my area - WMLG- westmidlandslupus.co.uk/ I have not found people who go to our meetings negative, in fact Yvonne who runs our group is an inspiration. I find it nice to know there is local support, we get talks and events. Plus it is nice to meet others with lupus (yes sometime you may even "compare notes on how lupus affects you") . It is a regional Lupus UK group and allthough we have a committee and structure, the group is dependent on what you make of it as everyone who attends events can have their say

[Alexandria]

I understand the sentiment of what artemis5 says in her blog and you are entitled to your opinion. Even though we share the same condition(s) SLE/Fibromyalgia we are all individuals that have different coping mechanisms and different things that make us tick. If you don't feel inclined to join a group thats fine but if others find it useful in some way what is wrong with that? no need to sneer. In todays climate, which will only get worse in the forseeable future, in which disabled people (especially those with invisible illnesses like us) are being vilified left, right and centre as scroungers etc it is especially hard. I run a small informal Support Group and we don't just sit around moaning about our aches and pains. We share experiences about anything that anyone wishes to talk about as well as keeping up to date with the many changes/challenges that face us as people with disabilities. Many of us have loving families but sometimes it is good to be with people who "do understand" DONT UNDERESTIMATE THE VALUE OF THIS. It is important to remember that anyone who run these groups do so because they wish to help others in some small way. Whats wrong with that?.

[artemis5 in reply to Alexandria]

Well, that's great you have this kind of group but I'm talking about something different. To me all these small groups are very inaccessible and stagnant. I wonder what is the age span of the members in your group? Usually we get diagnosed in our twenties and I think that's the time when many of us need information, support and encouragement. Also as I mentioned women trying to get pregnant and so on. When you have a small group of people who know each other and do things their won way it's difficult for new members to join and feel good there. A support group should be dynamic and well organized to accommodate needs of all kinds of patients. Btw. I have never been treated as a scrounger because of my SLE...

[artemis5]

Hi Sam,

I live in Glasgow, so quite far away unfortunately It would have been so great to start up a group together...

I have a random question for you. You said that you graduated from biomedical sciences and working in the lab, are you working in any potential biohazard agents? I'm wondering because my plan was to apply for clinical microbiology posts but that would mean working with all kinds of pathogens so my immunosupressed status could be a big issue there :/

[Samx in reply to artemis5]

Hi,

Shame you live that far away! Well i was a bit concerned about that when i started working in the lab (i take mycophenolate and prednisolone) my specialists that treat me at the hospital know what i do and have not mentioned that i shouldn't do it. The main bulk of my work involves handling blood, some people might think its silly working in a laboratory whilst being immunosupressed but i am very cautious and understand the risks. I work in more of the research side than the diagnostic so the samples have less risk of being pathogenic but they all still carry the potential. I suppose its only a choice you can make and maybe an employer could put in extra precautions for you. Would love to specilise in microbiology myself in a few years, i really enjoy it, even have my own microscope at home!

[Alexandria]

The group is small but very diverse, it encompassses men and women, one of the men is actually a carer for his wife who is badly affected by Fibro ( I believe that if you are a carer you sometimes need even more support as you are dealing with the fall out of the disease). We also have people with ME,MS, Chronic Fatigue Syndrome,Osteoarithitis, Fibro and SLE. I start from the premis that as these illnesses come about as a result of a breakdown in the immune system and have the same devastating effect upon people's lives and the issues that everyone has to deal with are often the same. I hold the meeting roughly once a month (dates not preset) from my own home and the aim is to keep it very informal so people can dip in and out as it suits them. I don't know about the dynamic aspect but am often told that the meetings are helpful and looked forward to. There is no membership fee and I provide refreshments at my own expense. I am only trying to help others. The Northamptonshire Lupus/Fibro Groups which are much larger and formal know of my existence and what I am trying to do in my own small way. Finally, I am glad that you have met with no hostility because of your illness but I have to say that many have as members of my group have told me. I personally have experience of this even though I worked for nearly 30 years.

[Melinda in reply to Alexandria]

Your group sounds very interesting Alexandria. I wouldn't mind coming along.

[pollyanna]

Hiya, I belong to an on line support group, it very small and very supportive. We have also had some meet ups and recently had few people come to stay, we had a fantastic time, and yes although we were all shattered, we had a great time and did give us all a real boost I agree that some groups can be all doom and gloom, and sometimes our group can be a little like that, but not for long as someone will come out with some wise crack or comment that gets everyone laughing and talking about positive stuff again. It is important for people to have somewhere safe, so they can say I am feeling crap! and that people within that site can say, sorry your feeling rubbish, rest up and tomorrow will be better!!! We are a small closed group and I feel I could not have got through the last year without the support of these friends, and yes most of them are friends, and no longer just on line So I am happy with the support that I both offer and receive and love my support group <3 I wish you lots of luck in finding something that is right for you x