What Does It Mean to Live With Lupus?
Last updated: May 2023
Lupus is an autoimmune disease. This means parts of the immune system attack the body. It is challenging for the body to manage the internal assault. Life with lupus looks different for each person. Lupus warriors must adjust to the new realities of the disease.
The Lupus.net Facebook community recently responded to the question: “What does it mean (physically, emotionally, socially, etc.) to live with lupus?” Many respondents shared what it means to them.
Lupus is upredictable
Living with lupus means life is unpredictable. It is hard to make and keep plans. It is impossible to know when a flare may strike. Respondents shared the limitations lupus places on their lives. It is difficult to say “no” and withdraw when they want to participate. Lupus takes away opportunities.
“Not knowing from one day to the next how you’re going to feel. Hard to make plans because you often have to change them.”
“Limitations in everything. Not knowing what each day brings.”
“You live like a roller coaster – your entire life is shifted, you’re limited, you don’t know what tomorrow will bring, no one gets you, and you’re being robbed of all normalcy.”
Lupus is chronic – always present
Living with a chronic illness is challenging. Lupus feels like the puppet master, pulling the strings of life. Respondents shared how lupus affects daily living.
“It means there is always something in the background controlling your days, no matter how much you try not to allow it. You have to make a very concerted effort not to let it become your identity, even though it’s difficult. You are still you.”
“It means your activities in life revolve around your lupus.”
“Impacts 100 percent of my life.”
Lack of understanding
Life with lupus can feel lonely. It is difficult for those without lupus to understand the challenges. The disease is painful and limiting. Too often, loved ones judge canceled plans or the need to rest. The emotional toll makes the disease difficult to bear.
“For me, it’s hard because people don’t understand how serious it can be and think you’re just lazy when in reality I feel 20 years older than I am, always tired and always in pain.”
“You’ll never understand nor be understood.”
Losing parts of the self
A chronic illness forever changes a person’s life. Much of what gave life meaning and joy disappears. Respondents wrestle with how to process that loss. There is deep grief in letting go of the old life. Lupus attacks not only the immune system but the psyche. Respondents face the challenge of redefining themselves with lupus.
“Loss of identity and feelings of self-worth.”
“I feel like I’ve lost my freedom. I feel like a prisoner of my own body. I never ever feel healthy, refreshed, or energized. I feel very lonely, tired, and hurting in every way possible – physically, mentally, and emotionally.”
Lupus fatigue is more than feeling tired. It is a crippling weariness that a good night’s sleep does not solve. It clings to the body like a shadow. Constant fatigue is a heavy burden for respondents. They feel tired and fed up with endless exhaustion.
“Tiring. Never-ending. Wearisome.”
“You just get tired of feeling tired.”
“You’re drained physically and mentally every day. Pain levels are always at the high end.”
We appreciate all the insightful comments about living with lupus. Each person’s journey is unique, but the shared experiences are affirming.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?