Support from Caregivers That Works (& What Doesn’t)

What are the most useful things your family, friends, and/or caregiver do to support you? Helping me with physical tasks when I am unable to perform them during a severe flare. Mental support in the form of always being a positive and understanding voice on the end of the phone line, WhatsApp or Facebook messaging when I want to grumble about my lupus. And simply just offering up their time to visit me when I’m ill at home or in hospital, or the flexibility around moving work appointments and deadlines to accommodate me during times when I am unwell. How could you be better supported by your care network? It would be nice if there was a more official lupus forum supported by the public system here in New Zealand as opposed to a Facebook group where I can meet other individuals living with lupus. I know three people with lupus at this stage who’ve taught me a lot about living with the symptoms, and I know them only thanks to mutual friends introducing them to me. It would be helpful if there was a support group readily available when I was diagnosed in the public system – admittedly there was a support group for people with connective tissue disorders, but the website was long disbanded when the nurse at the public hospital informed me about it.

Still puzzling over something?