Lupus In America: Community Findings

Not only do symptoms of lupus vary widely, so does the length of time that symptoms stay present. Symptoms such as brain fog, seizures, alopecia, and rashes may show up suddenly, then disappear just as quickly. We recently surveyed hundreds of people with lupus to find out more about their symptoms, and life with lupus in general. The results from our 2020 Lupus In America survey revealed that although there are differences in navigating lupus, there are many similarities, too. Lupus symptoms versus diagnosis Overall, about 1 in 5 survey participants started experiencing symptoms before adulthood (under 18 years old). Another 25 percent started experiencing symptoms between 18 and 29 years old, and a similar amount had their first symptoms between 30 and 39 years old. The remaining 30 percent of participants experienced their first symptoms after 40 years old. However, one trend seen among people responding to the survey was that age of diagnosis often lagged behind the age of first symptoms. About 70 percent of participants received their lupus diagnosis between the ages of 30 and 60 years old. This delay to diagnosis may be a common experience for many with lupus and may be due to nonspecific symptoms and misdiagnoses along the way. Because of this, it is common for it to take years for doctors to diagnose lupus. Lupus community experiences with diagnosis To hear more about your experiences, we reached out on Lupus.net Facebook page, and we asked you to fill in the blank: “My lupus symptoms started at age ___. I was diagnosed at ___ years old.” More than 100 community members commented, and here is what you had to say. Lupus symptoms in childhood For some of you, lupus symptoms showed up in childhood. This is a diagnosis you have been dealing with your whole life. Many of you who experienced symptoms early on received a diagnosis shortly thereafter. “My lupus symptoms started at age 5. I was diagnosed at 8ish years old.” “My symptoms started at age 11, and I was diagnosed at age 12. I lost almost all of my hair, experienced joint pains and stiffness, Raynaud’s disease, enlarged spleen, butterfly rash, and extreme fatigue were just some of the symptoms I experienced coupled with abnormal labs made it fairly easy for my physicians to diagnose me in one year. I am 48 years old now.” Lupus symptoms in teens Many community members were in their teens when the symptoms of lupus began showing up. However, several of you shared that it took more than a decade for a doctor to correctly name what was happening with you. “My lupus symptoms started at age 16 and I was diagnosed with SLE Multi and Nephritis Stage 4 at 27.” “Started at age 17. I was diagnosed at age 26.” Lupus symptoms in the 30s Lupus most commonly starts showing up in the teen years through the early 30s. More than a few of you shared that this disease did not start affecting you until your 30s or 40s. However, you also shared that it took two decades for doctors to connect the dots, which, sadly, makes sense because this is a disease with flare-ups and remissions. Because it comes and goes, one way to help your doctor if you are unsure if you have lupus is to keep a daily journal of symptoms so that you remember and have a record of what you have been dealing with, and so that your doctor can see the bigger picture behind your flare-ups. “My symptoms started when I was 30-ish. I was diagnosed at 50.” “Started in my 40’s and the diagnosis came when I was 62.” Lupus symptoms and diagnosis in the 40s We also saw that many of you who experienced symptoms in your 30s and 40s were diagnosed the same year. This could be because older patients are more in tune with what is ‘normal’ for their bodies, and are better able to explain to a doctor what is going on. Or, it could be that many of you saw skilled doctors as soon as possible. However it happened, there is relief in having a diagnosis—and course of treatment—sooner rather than later. “38/38.” “Symptoms started at age 30 and was I was diagnosed at age 30.” “Symptoms started at age 40 and I was diagnosed at 40.” We want to say thank you to everyone who shared this story. We appreciate how active and vocal the lupus community is. Thank you. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Health Union did a Lupus In America survey that revealed: "More than 6 in 10 people with lupus feel their lupus interferes with their ability to work." I have felt insecure about my job security during several flares. However, I have been fortunate to have employers who understood and supported me during my worst flares. Here I will share my 3 principals on building a career as a lupus warrior. Although my perspective may only be relative to those with office/desk jobs, believe that you can still build your own version of success as a lupus warrior. 1. Vulnerability In my diagnosis story, I spoke of the power of vulnerability I discovered as an adolescent. Today, as a mid-career architect, I still hold vulnerability about my condition at a high value. Whenever I have changed jobs, I made a point of having a conversation with my future employer about my disease, the limitations it causes me, and my needs. I made sure to make it clear that there will be days while I might "look good" to them, I am not feeling right inside, and I need to take a sick day. If the employer wanted to hire me because of the professional values I offered, they assured me that they would be accommodating and flexible towards my needs. The principal of vulnerability has served me and allowed me to build a successful full-time career amidst flares, pain, fatigue, and, worst of all, chemotherapy. 2. Open and honest communication When I wrote about migratory joint pain, I explained how inflammation moves around in my body from the left wrist to the right knee to the left hip. Let's say I wake up, and the pain is in my knee. I can't walk/drive to the office, but I can still sit at my laptop and work a full day from home. Because my employer is already aware of my condition due to vulnerability, I ask for a flexible day and work from home. To set the expectations right, I will give them a heads-up that my condition is unpredictable and request flexibility for the upcoming days. Now, if the next day, the inflammation moves to my wrist, and there is no way I can hold a mouse, I take a sick day and rest. Open and honest communication allows me to rest and heal without being stressed out about, "what is my employer thinking of me?" 3. Not being a victim Lupus can cost many lost work hours. The Lupus In America Survey revealed 16 percent of work time was missed in 7 days among the people who took the survey. Lost hours and a reduction in productivity can cost people their jobs. If you need to take time off because lupus is forcing you to rest, instead of giving up on your career, consider everything that can help you stay professionally active. These can be: Educating yourself on the laws that protect you. These will be ADA (Americans with Disabilities Act) and FMLA (Family and Medical Leave Act). Visit this article for further explanation. Find a career that supports your condition rather than confining yourself in a situation where your disease defines you. The most important perspective to keep in mind is building YOUR best life around what you CAN do, rather than letting the limitations of a disease define what you CAN'T do. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Family planning can be a tricky, delicate subject for many people. Having lupus only makes the matter more challenging. While it does not mean that children are not a possibility, it does mean the conversation may take more time and consideration. In the 2020 Lupus In America survey, we learned from you that women with lupus often wonder if children are even possible. Results showed that 84 percent of 589 people who took the survey have children, while 41 percent postponed or decided not to have children because of lupus. To learn more about how you are handling family planning, we reached out to members of our Facebook community and asked: “Has lupus impacted your ability to parent?” Nearly 100 of you answered, and here is what you said. “I have not been able to carry any pregnancy to term.” Lupus and the drugs often used to treat it can make getting pregnant difficult, if not impossible. Sometimes, doctors recommend that women on certain lupus drugs not get pregnant, since the drugs could affect the baby. A number of women in the community are currently facing this challenge, and they are finding ways to make peace with it. Despite the challenges, many women have been able to overcome the odds and give birth to healthy children. “Facing infertility because of it.” “When I got diagnosed, I was 40. Just before that, I was trying to conceive one last time when my rheumatologist told me I cannot because the medication I was on would kill the baby. I was heartbroken.” “It took me 10 years to conceive each of my children. Had two miscarriages before that. I was told I had endometriosis. Years later, I found out I had no signs of endometriosis. Doctors could not understand, until I was diagnosed with lupus.” “I was on chemotherapy for 6 months, and the doctor said it could cause fertility problems. I was really devastated. I am only 23 years old and just got married. And whenever people talk about babies and getting pregnant, it just breaks me because I do not know if I will be able to get pregnant. So, I really hate it when people pressure me to have a baby. Physically and emotionally, I am not ready.” “I have not been able to carry any pregnancy to term. So, yes.” “I was barely able to keep up with the kids.” Many of you in the lupus community who are raising kids struggle daily. You’re fighting fatigue to show up for your kids and manage a full household. Most people with lupus constantly contend with some level of fatigue, so it makes sense that parents struggle even more. However, many of you are determined to be good parents and are doing everything you can in the house while trying your best to take care of yourself. It is a balancing act that takes practice. Remember, there is no such thing as the perfect parent – lupus or otherwise. Just because you are not able to show up with endless energy does not mean your kids have less of a parent. Energy levels do not affect the ability to love deeply. “I was barely able to keep up with the kids. I had to take naps when they did, so I could have enough energy.” “I am not as active with my kids. I feel bad for them.” “Lupus affects my ability to parent almost more than anything else in my life, because parenting is so constant and consuming.” “I decided to not have children when I got diagnosed.” Others of you shared that having lupus has shifted life plans. It can be a hard, heartbreaking decision. There are a host of reasons why some women in the lupus community chose to not become mothers. Family planning can be tough, and only you know what is right for you. “I am actually scared to get pregnant.” “I decided to not have children when I got diagnosed.” We want to give a heartfelt thank you to everyone who shared. We know fertility is a sensitive topic but one that weighs heavily on so many. By having this candid conversation, it is our hope that our community members feel less alone as they walk this path and figure out what is best for them. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] We recently surveyed hundreds of people with lupus to find out more about their daily experiences, diagnosis journey, symptoms, and how it all affects life in general. The results from our 2020 Lupus In America survey revealed that only 16 percent of 589 people surveyed said they feel their lupus is controlled. As of 2020, there is only one FDA-approved treatment for lupus. This could understandably weigh heavily on the outlook for the 63 percent of people who took the survey who claim their condition is moderate, and 20 percent who report their lupus as being severe. Living with lupus often means managing a laundry list of symptoms that require constant effort. Plus, stress can worsen symptoms. This often creates an ongoing struggle to maintain physical and emotional balance in order to feel as healthy as possible. With so much to manage, it makes sense that people often describe feeling out of control when it comes to their lupus. Is your lupus under control? To learn how members of our community are handling this balance, we asked our Facebook community to tell us: “Do you feel like your lupus is under control?" More than 250 of you answered. Here is what was shared. “I have too much emotional stuff going on right now.” The vast majority of you replied no, you don’t feel like your lupus is under control. The biggest reason is stress. With everything going on in the world right now, it makes sense that many of you feel especially challenged by your lupus. “No, but it used to be. I have too much emotional stuff going on right now.” “Stress keeps mine up and down.” “High stress has caused a major flare-up.” “Some days are better than others.” Others shared that you experience an ebb and flow with your lupus. Some days you are fine, and the pain is either manageable or nearly nonexistent. This is great news! You might want to keep a journal to see if you can find what helps to keep your symptoms in check – it might be diet, sleep, or exercise. Keeping a food diary and exercise log may help you zero in on triggers and uncover what is helping you avoid stress and flare-ups. “Not really. I get a day I feel good, then I am down for 3.” “Some days are better than others. My anxiety is horrible.” “Always feeling tired.” The extreme fatigue that comes with most cases of lupus can be one of the hardest parts of this diagnosis. Sadly, it is unclear why tiredness is a symptom. Thankfully, there are ways to manage fatigue. They include regular exercise and learning how to check in with your body so you can recognize warning signs before you reach exhaustion. “Mostly. It would be great to get a good night of sleep and actually maybe feel rested. I mean FULLY rested.” “No, I have everyday pain, and I am sleepy all day long. I feel fatigued.” “Always feeling tired.” “Nope. Fatigue is the worst.” “My legs and hands are really bad.” Most people with lupus know that pain, stiffness, and swelling often get in the way of good days. The fingers, wrists, elbows, knees, ankles, and toes are often affected. Many believe that inflammation is the culprit behind this pain. Managing inflammation with diet, medicine, and stress-management can help with these symptoms. “I hurt badly every day. My lower legs swell and go numb constantly.” “My legs and hands are really bad.” “I have horrible muscle pain in my legs. But mostly in my right thigh. Grr!” Thank you to everyone who shared their experiences for this story. We hope that members of the community feel connected when they see they are not alone in dealing with lupus. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Lupus In America: Community Findings

Age of Lupus Symptom Onset vs. Diagnosis

Building a Career as a Lupus Warrior

Family Planning with Lupus

Community Poll

Lupus And A Sense of Control

Other Health Conditions Experienced Alongside Lupus

How Lupus Impacts Work and Career

Relationships With Lupus Healthcare Providers

Top Lupus Symptoms Include Joint Pain and Fatigue

Expectation vs. Reality: The Impact of Lupus on Quality of Life