Below is a collection of honest, raw, and vulnerable thoughts from lupus patients and caregivers. These sediments give a glimpse into the thoughts and feelings that arise with navigating this illness. We ask as you read them, to ponder these vignettes, and our hope is that they will inspire you to show kindness...because you never know the challenges someone is going through when they are dealing with lupus.
I wish folks wouldn’t assume what is happening on the inside based on what they see on the outside. If you have met either of my children you assume they are healthy, kind, strong, and joyful. They have been - but they each struggled with being weary, mature before they needed to be, sad, depressed, and grieving the life the other children enjoy without the tools of communication that adults have learned.
I wish people knew it is not enough to say you care, that care has to be followed up with action. You need to show you care and show your support.
-Shonna (caregiver, advocate, and mother to Genesis & Micah)
I wish people understood that this disease affects everything you are as a woman. Not just medically and not just emotionally, but every aspect of a woman.
I would love for people to understand that when you are first diagnosed you need to go through your own transition before you are able to let others in and that is okay. I think a lot of newly diagnosed get shamed because they don’t know how to handle it and then family members get offended.
I really wish people understood that men get lupus as well and that we are overlooked at times in the lupus community because most of the topic discussions are based on a female perspective so it keeps the focus on just females and this keeps men from being involved and makes most men feel isolated at times. So I'm hoping in the future we can include men in our topic discussion whenever we have lupus groups or meetings and I think that would help a lot in my opinion
I wish people understood how much pain we deal with every single day of our lives. That a “good day” is just being in less pain than normal.
I wish people would understand that there is no cure.
I wish people understood that when people say, “but you don’t look sick” it doesn’t mean that I’m not hurting.
I wish people understood the unpredictability of painful and pain-free days.
I wish people understood that I am not unreliable, my lupus is.
I wish more people knew what lupus is and how severe and disabling it can be.