Living with Lupus

Living with Lupus - Support Groups are so important
A story by Lorraine Steedman

Having SLE (Systemic Lupus Erythematosus) changes the course that you may have mapped out for yourself, your career, your job, your social activities - even your family life but it doesn’t mean it all stops here.

Education is the key to learning how to manage with this chronic illness.  Seminars, the internet, books all help to understand the changes that have to be made in your daily life, but also having people around you who are experiencing similar symptoms and can be of support are very important – and that is available thru the Whangarei Arthritis Foundation. 

The 20+ Group meets once a month in a social gathering where friendships have been made; shoulders to lean on are available and phone chats are good for those days when things are not going so well.  Sometimes it seems like a show and tell group which is just what is needed when you are uncertain when new symptoms arise.  Great discussions have been had on different treatments that have helped some and not others. 

Without a great support group you can start to feel very isolated and alone and by becoming part of a support group you can feel uplifted and understood.  It can also be a great place for partners of Lupus Sufferers to receive support too.

I once read an article written by Pam Schmidt who said “Just because I’m sick doesn’t mean I can’t have a nice life.  Okay, so I probably won’t get my old life back, but I can make a new one.  I don’t dwell much on what I can’t do.  Instead I spend time trying to figure out how I can be happy doing what I can do.

Another article that has come to mean so much to in explaining in simple terms what it is like to have Lupus is the story titled “But You Don’t Look Sick!” by Christine Miserandino and can be found on the website www.butyoudon’tlooksick.com   I highly recommend reading this article and passing it on to family and friends.

Sue Baker, Arthritis NZ Northland Service Centre Coordinator says that:

Lorraine is a valued member of our Fibromyalgia and 20+ Support Groups.  She Volunteers for Arthritis New Zealand phoning other group members to remind them of the next meeting, helps out at Appeal time and also selling Lottery tickets.  When we have Seminars and other “get-togethers” she is always willing to help – when and if her health allows.  One unwritten rule we have for our volunteers is to make sure they are okay before the say “yes” to help.