The Lupus Foundation of America and Eli Lilly and Company released results from a new survey that sheds light on the lupus journey and the challenges not only for those living with lupus, but also for lupus caregivers. The UNVEIL study, which involved over 1,000 people with lupus and lupus caregivers, highlights the devastating impact lupus has on all aspects of life including family, work, finances, treatment experiences and overall quality of life.
“Throughout the course of their disease, people with lupus experience significant symptoms such as pain, fatigue, depression, cognitive issues and physical impairment that impact every facet of life,” explains Sandra Raymond, president and chief executive officer of the Lupus Foundation of America. “Despite these devastating complications, lupus can be hard for others to see because there may be no visible symptoms. The UNVEIL survey provides the public an opportunity to see how life can be interrupted by lupus and why we need everyone’s help to fight this cruel disease.”
The Lupus Journey Often Begins With a Long, Complicated Path to Diagnosis:
- On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.
- A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.
The Severe Impact of Lupus Proves A Challenge to Treat:
- On average, people with lupus surveyed take nearly eight prescription medications to manage all their medical conditions including lupus.
- Of the 23 percent of people with lupus who experience severe lupus flares all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days.
Lupus Interrupts Every Facet of Life
- For the majority of people with lupus surveyed (89 percent), lupus impacts their work life.
- More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.
- Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.
- A large proportion (41 percent) of caregivers surveyed are only able to work part-time or intermittently, or are unemployed, with nearly half (45 percent) of those indicating caregiving responsibilities being the reason. In addition, 60 percent note they spend 16 or more hours per week helping loved ones with lupus.
Family life/Daily Living
- More than 75 percent of caregivers surveyed help a loved one with lupus with daily activities, such as cooking, shopping, household chores and providing financial help.
- Eighty-four percent of people with lupus surveyed indicate they feel they are a burden to their family and friends due to their inability to perform daily activities. In addition, 94 percent indicate that lupus interferes with their ability to enjoy life.
- Nearly three in four people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities. For caregivers, nearly half surveyed (49 percent) replied that caregiving responsibilities impact their ability to socialize with friends.
- The majority of people with lupus surveyed feel anxious (90 percent) and depressed (85 percent) due to their lupus.
- More than 94 percent of caregivers surveyed experience increased anxiety and stress in relation to their caregiving, worrying that their loved one with lupus will become sicker.
“Lupus goes well beyond joint pain and fatigue. For me, it has derailed my life and impacted not only me but everyone around me,” said Wendy Rodgers, a California woman living with lupus. “Initiatives like this take us one step closer to helping the public better understand the needs of people with lupus, as well as those who care for loved ones with the disease. The more people know about lupus, the better support there will be for those living with the disease and the sooner we can conquer it.”
Yes I know exactly what you mean I suffer from Lupus as well and believe me it’s no fun I don’t know what it’s like to not be in pain every single day I do everything myself still only because I refuse to let this disease take over me …
I’ve had systemic lupus, sjogren’s and raynaud’s for 15 years. I’ve outlived the original prognosis by 5 years so far, and plan on continuing to live.
However, lupus impacts my life daily. Every day is a struggle, pain wise, and I always try to put a smile on my face and deal with each day that this disease tries to ruin for me.
It has messed up every gland in my body, including my lymph nodes. I’m in a constant flare up, with headache, swollen joints, extreme fatigue, and generally feel like a truck has run me over (just to name a few) every day. It has affected my heart, my vein system (vasculitis) and my stomach and intestines.
I had to give my career up years ago, as it was too much on me to try to continue my career, which make finances a rough road.
It has stolen my once beautiful teeth, and I struggle to be able to afford dentistry work (sjogren’s) because my medical insurance will not cover dental work, even though it is medically related.
People look at me, and unless they see my swollen hands, or see me walk when I am hurting, they think I am fine. I honestly don’t care what others think, but they shouldn’t judge what they don’t know. They have no clue the pain I deal with daily. If a healthy person had to live in my body for one week, I’m not sure they would survive.
I am strong because I have to be. I try hard not to complain. I paste a smile on my face (even though it is usually a fake one) and try to help others as much as I can. I try to help others newly diagnosed with it, and I try to spread as much awareness as possible to help with research.
My younger sister also has the same diseases I have. It has taken her kidneys from her. She is on dialysis 3 times a week, for 4 hour sessions. It has ruined her quality of life as well. She is frail, yet she is strong.
I have lost many friends to this disease. A cure needs to be found, so perhaps someday some of us won’t have to suffer in silence.
Over the last 15 years, I have seen a rapid rise in the amount of people being diagnosed, men and women. We all struggle every day. Some of us are better at coping than others, but some of us have had it longer, therefore we are more used to the pain. It’s pretty sad when being in pain is “normal”. Please help find a cure! Thank you for reading! 🙂
I first would like to say, I completely understand everything you are going through. You described me to a T!
I was Diagnosed with SLE Sjogrens and the other stuff it comes with last April. I was a nurse, a great nurse. I knew I had it. I told my husband I thought I did, he had been telling me to go see our PCP for swollen hands and pain for many months by then. I finally went I told her my thoughts and concerns (fighting the tears). I had it, It came back positive, then positive again. So I got tons off meds and more Dr’s and I am no better than a year ago.
I am a mom (34) of 4 young children and wife to my soul mate. If it weren’t for my husband I would have ended it all a long time ago. Sad but very true. I feel into a deep depression and I took care of people with Lupus so I know what’s coming for me. I worked in Hospice. I am terrified and overwhelmed I don’t know what to do. I feel like a burden and a constant complainer. I am home all the time because the sun and heat actually hurt me.(AZ)I had just had my last baby when I found out and had to stop nursing her asap because my DR said it wasn’t ok to do while taking steroids. I best feed my baby girl 15 months and I am glad I got to do it that long. I had to wean her completely in 2 days, she did well. Again when she cried for me and I had to say no mom has no more I would cry and feel guilty. My parents and brothers hasn’t talked to me in 7 months and I saw/talked to them everyday of my life.
My meds are not working and I am getting worse, my pain is unreal and I want someone to believe me. I am not a drug seeker…I am trying to live a better life pain free.
We participate in the End Lupus walks and this year my husband and I company will be out there again this year.
We raise money and donate. WE own potts lawn care buckeye on FB and purple butterfly and says on our logo we proudly support the Lupus foundation.
I hope everyday for a cure, we will
I have suffered with SLE for 13years now, I would just like to add that it’s not only all the issues that Lupus brings, it’s the connective problems that makes every single moment a struggle in life. The second thing that makes life a battle is having to justify every dam day to people who don’t understand nor wanted to!!! I have 2 overlaps that make my& my family life very hard to deal with daily life, and send everyone who suffers from this horrible condition, my thoughts & understanding as to what we have to deal with daily.xx
I have a lot of these symptoms, but the dr but it down to Fibromyalgia. Which a chronic pain illness. I also have overactive thyroid, type 1 diabeties, dyrufrens disease (hands)Arthritis in both hips, SPD (pelvis)
It sucks being ill and unable to have a a full life. What sucks more is that their is no cure for these invisable illnesses.
I have Lupus I have had to have two hip replacments I live in constant pain and friday have to have another surgery due to lupus I wish more people understood what we go through. I hate living like this and now its winter more pain 🙁 There seems to be no cure in site
Winter. You said it. This has been the worse winter in all my life!! Worse part is, we had very moderate days. I dread next year. This week I was asked by my husband not to drive with our daughter anymore, as he thinks my meds affects my driving. “You can drive yourself, but I don’t want to take chances”. He is probably right. I am now officially a bad mother, wife and employee. But we have plenty to be grateful for, so no complaining….fake it till you make it,right??
I’m not sure where you’re from, but I welcome winter. I’m down south on the gulf coast. The heat and humidity are sweltering and every time I even walk to my car I almost pass out. It’s absolutely miserable.
It intensifies all of my symptoms. I lived in upstate New York many years ago and I suppose winters like that are terrible, too. Perhaps getting somewhere in the middle is a good idea.