You answered: Social life with lupus

Lupus Foundation of America

Resource Content

Around three quarters of people with lupus say the disease limits their ability to participate in social activities, according to a survey conducted by the Lupus Foundation of America. In May 2015, we asked our followers on Facebook how their friends could better support them in maintaining a social life while living with lupus. In honor of National Friendship Day, we’re sharing some of your advice:

  • “Just simply accept that we have good days, bad days and then there are the really bad days.” – Karrie Mendonca Wood
  • “Please, don't stop inviting us to things. We may have to say no or pull out at the 11th hour, but we would still love to spend time with you.” – Jude Brennan-Ward
  • "Understand that some days are better than others. Be patient and don't take it personally if I need to change or cancel plans. I want to do everything, but I have to listen to my body, and sometimes that means rest.” – Cammi Buttner Clara
  • “Come to my house to hang out instead of making me get dressed and drive over to your house. I feel more comfortable in my own home and have all my meds, heating pad, etc at home.” – Nicole Tellor
  • “My friends come over in PJ's and we have ‘bed picnics’ and watch movies! It's beautiful.” – Amber Coffee
  • “Understanding is the greatest and simplest way to better support me.” – Patty Gomez
  • “Instead of saying, “call me if you need something,’ offer specific help. Say, ‘I'm coming over Monday night at 6:00, and I can do some of your laundry while we eat take out and watch a movie. Ok?’” – Jonella Williamson
  • “Be patient, supportive and understanding. Love me through the bad days, even when I can't get out of bed or do anything. Be there for me when I just need someone to talk to or I just need someone to sit with me.” – Vicky Shriber