Sometimes, people with lupus or other chronic health conditions hide their symptoms from family members, friends, or colleagues. Telling other people about your lupus symptoms doesn’t always elicit a compassionate response. People who aren’t familiar with lupus may not fully understand what you’re going through or how the disease affects your daily life. They may seem unsympathetic or question the validity of what you’re feeling.
Even when others are kind and supportive, you may have other reasons for keeping your condition private, such as not wanting to worry family members or appear less competent to your employer.
Members of MyLupusTeam have discussed their choice to share or hide lupus symptoms from family, friends, coworkers, and even their health care providers.
MyLupusTeam members have shared that family and friends don’t know much about the causes of lupus, so they worry about feeling misunderstood or stigmatized if they talk about their symptoms.
“When I was diagnosed with lupus, I was ashamed as if I had this contagious illness that I got due to being unhealthy. I didn’t tell my family, other than my kids and a few people I trusted,” one member commented.
Another member found a way around this problem by educating her family members about lupus: “I used to bear it and keep it to myself because I didn’t think they would understand or it would freak them out. So I bought books and a DVD on lupus so they could be better educated about lupus. Now they know and accept me and are the most awesome support system ever!”
However, sharing your symptoms can come with the risk of unsolicited advice or unfair judgment. “I don’t want to worry anyone, and I feel like it just sounds like I’m complaining. Otherwise, I don’t want people trying to ‘cure’ me. It’s just best if I keep it to myself,” one member wrote.
“I hide my lupus symptoms. Heck, I thought I was the only one who did that. For example, I will lie about having car problems if I cannot watch the grandkids due to my symptoms,” another member shared. “I am afraid of the uncaring reaction I will get if I am honest.😕”
Certainly, there are also potential benefits to sharing your symptoms, like finding support and building a deeper connection with loved ones. But there may be limits to how much you want to share.
One member explained, “My family is very supportive, at least my three sons and my mom are. But I worry about being too honest with them and making them worry about me. So, finding the right person to talk to is very important.”
Sharing lupus symptoms with your employer or co-workers can be stressful. Certain symptoms of lupus are harder to hide than others. Skin rashes, hair loss, weight loss, joint pain, and signs of a flare-up may be hard to conceal. Still, many members of MyLupusTeam have worried about losing their job if they’re too honest about how much lupus affects them.
“My biggest frustration right now is lupus fog,” a member posted. “It’s awful and hard to hide, especially at work. I work in health care on the dementia/Alzheimer’s ward, so they always watch for signs of confusion.”
Another member commented, “I was diagnosed 39 years ago and have always hidden my symptoms. I have a physically demanding job, and I don’t want anyone thinking I can’t do it or feeling sorry for me. I guess it’s just my stubborn personality. I’m on my own, and there’s no way I can stop working; I’d never make it.”
“I don’t want my bosses to see me as weak. I don’t want to lose my job,” shared another member who keeps symptoms private from colleagues. “I’ve only missed one day of work in all my time there. Yes, some days, it’s a real struggle when my boss is wondering why I’m limping one day. Why have I gained 30 pounds? Why do I have a mysterious fever and seem miserable? One day, I’ll be strong enough to tell them my secret.”
Although concerns about workplace discrimination are common, it’s important to understand your rights as an employee. You can still choose to hide your symptoms if you prefer, but you shouldn’t feel obligated to hide out of fear of being fired.
It’s a good idea to familiarize yourself with your rights under the Americans With Disabilities Act (or ADA). If you’re uncomfortable speaking with a human resources representative at work about lupus, ask your health care provider for a social worker who can provide you with objective guidance on communicating with your employer about your condition.
One of the worst places to hide your lupus symptoms is the doctor’s office. But sadly, studies show that many people with lupus don’t disclose the full extent of their symptoms during health care appointments. Mental health symptoms are often left out, specifically anxiety, suicidal thoughts, depression, and changes in mood and cognition.
“After dealing with lupus for 10 years or more (who knows how long I’ve really had it) I’m just now telling my doctors how much pain I’m in daily,” shared one member.
If you have a history of not feeling heard or understood by health care providers, you may be reluctant to talk to your rheumatologist about how you’re doing. But finding a health care professional you trust and feel comfortable with is essential to getting proper care.
Missing the chance to share your symptoms is a disservice to yourself. You may not receive the care and treatment you deserve to keep lupus flares under control when you’re not completely honest with your health care team. Health care professionals aren’t just there to help you with the common symptoms of lupus. They’re also your resource for medication side effects and disease activity in unexpected parts of the body.
There are probably more benefits than downsides to sharing your lupus symptoms with at least a few people to avoid suffering in silence. However, some members have regretted their decision to talk about lupus: “I didn’t hide it, but I sometimes wish I did. I lost my career, my friends are different, and my family is overwhelming. Others still don’t understand why I can’t attend events sometimes. It’s hard either way, I guess.”
Nonetheless, being open about your symptoms with the right people can provide a sense of relief and improve your quality of life. And if nowhere else, it’s crucial to be forthcoming about your symptoms with your rheumatologist so you can receive accurate medical advice to keep flare-ups under control.
Many members have found sharing their symptoms to be a positive experience. “I don’t hide my lupus symptoms. I can discuss this disease without being ashamed of it. I have been able to help several of my coworkers by openly discussing it,” wrote one member. “Several of them have been diagnosed with an autoimmune disease after talking with me and discussing similar symptoms that they were experiencing. I am glad I can openly talk about it with my friends, family, and even strangers.”
“I hid my lupus from people for a long time because I didn’t know how to process it. Now that I’m getting to know other people who have it, talking to them makes me feel a whole lot better,” another member commented.
If you decide to discuss lupus with others, the Lupus Foundation of America offers a guide for explaining the condition. You can explain that:
You can also talk about your symptoms and how they affect your daily life and social life. For example, you can share how concern about kidney problems has an impact on your diet or how photosensitivity makes beach trips difficult for you.
If you have a form of lupus that affects your skin (cutaneous lupus erythematosus or discoid lupus), you may want to explain that your skin symptoms are not contagious.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 214,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you let others know when you’re experiencing lupus symptoms? Or do you prefer to keep symptoms to yourself? Share your feelings in the comments below, or start a conversation by posting on MyLupusTeam.