Every year (as much as I’m able) my mother and I go to a couple of the SLE Lupus Foundation’s hospital tour lectures. While there are tons of great reasons for actual patients to go (speak one-on-one with specialists, get resources, learn about clinical trials and new medications and be better informed), I think my mother gets more from them than I do.
Living with lupus is not easy – and neither is living and loving someone with lupus. They may have no idea why we can clean the whole house one day and not be able to get out of bed on another. They may have no idea why we look fine, but complain of aches and pains. They may have no idea of what lupus is and how it affects us – and telling someone about it doesn’t automatically mean that they understand what you’re feeling. They are still outside, looking in, often in confusion.
This is why education is so important – it gives friends and family a better understanding of how lupus affects their loved ones on all levels, and gives them access to knowledgeable experts who can answer their questions as well as yours.
So, for lupus patients who are feeling unheard or misunderstood – find local events and drag your family and friends.
If you have a friend or family member with lupus, show your support, by going to lectures and educating yourself.
As 80’s as it sounds, knowledge is power.
And now for the news: