Sharing the Journey: Talking About Your Invisible Symptoms

This series – Sharing the Journey – is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.

Lupus is often called an invisible illness because friends, family, and coworkers often can’t tell when you’re dealing with a flare. How do you communicate how you’re feeling with people in your life when your symptoms can’t be seen?

I have a loud, very talkative personality, so when I have a flare, it is pretty evident because I get very quiet. Anyone who has spent a lot of time around me can catch on very quickly. For those who may not know me that well, I’m very open about lupus. I just explain to them what it is, how it typically affects me, and how it’s affecting me in that moment. In my experience, people have been very receptive to learning more and supporting me. – Kayla

For me, I may see a rash appear on my face and I know this is the beginning of a flare. Friends, family, and co-workers often can't begin to understand that the rash is the beginning of what is taking place on the inside. You appear okay, aside from the rash, but fatigue and pain can be an overwhelming challenge. One example would be when I went to an event and I looked like a million bucks with my hair, nails, and makeup done flawless. I went to the ladies lounge but had difficulty leaving because I was experiencing tremendous amount of pain. After about 15 minutes, my friend came into the lounge and asked was I okay. I told her no and as a matter of fact, I really needed to go home. What’s crazy is when I told others at the event that I was sorry but I had to go home, I was told by many that they would have never knew I was in pain because it was invisible. If I don't have my walking cane in plain view, no one would guess that every joint, from my arms, hands, fingers, and legs, are so swollen and in pain. I think the lupus community as a whole experiences this invisible pain. It’s a lot like emotions – if you don’t wear them on your sleeve, people don’t know what you’re going through. My motto is to speak up and tell your loved ones – don’t assume they can look at you and tell. – Sylvia 

My go-to answer when I am dealing with a flare and cannot attend an event, go to school, or go to work is that I am "sick.” This usually works when explaining my situation to a boss or an acquaintance.  I'll tell the people I'm close to that I am having a lupus flare. My biggest symptom is fatigue so often I will get to the end of the workday and have no energy left to spend with others. I like to explain myself as a glass of water: Most people start the day (or the week) with a full glass of water (aka energy) and they slowly drink it throughout the day, I start the day with a half or 3/4 full glass (the level of water depends on the severity of my flare). This means that I still have energy to get the tasks done that I need to do and to be pleasant to those around me, but I'm out of that energy much sooner than the rest of the world. This is a good way to explain to others why I am so perky and energetic during the day yet too fatigued to spend time with others at night or on the weekends during a flare. – Becca

First and foremost, open communication with your friends, family, and coworkers is the only way to ensure they can tell when you are in a flare when it’s not visible to the naked eye. Personally, I adopted the “spoon theory.” It’s the story of a woman living with lupus who is asked by her best friend, “What does Lupus feel like?” She handed her friend 12 spoons and asked her friend to name her daily activities. As her best friend named them, she took a spoon away for each activity. Before her friend got to her commute to work in the morning, most of her spoons were gone. I use this theory because each morning I’m not sure how I will feel or how many spoons I will have. I have to plan each day accordingly and the loss of the spoons represents the loss of energy I have after doing certain things. Some days I wake up and have 12 spoons and look the same as the days I wake up with only 5 spoons. My friends and family, after hearing and understanding the story, simply ask how many spoons I have and based on the number, they will decide how to handle me with care that day. Because I openly communicated my experience with the spoon theory and talked about what the number of spoons means to me personally, my friends and family are now able to effectively know how I feel, no matter my outward appearance! – Angel

It can really be difficult to explain to people how you’re feeling when you look totally fine. It’s important for close friends, family members, and some coworkers to know about your lupus – that way, when you are feeling down or having a flare, you are able to let them know you’re having a bad day. Right now is a great time to bring lupus up to others with all the talk about hydroxychloroquine (Plaquenil) in the news. If you take that medication for your lupus, you can tell people which can then lead to more conversations about lupus itself and what it entails for you. – Roxi

This is a tough one – even after 12 years of living with lupus. There's always a fear that you’re burdening or overwhelming people, or that they won't understand no matter how hard you try to explain because they're not dealing with it themselves. The best way I've found to describe a lupus flare is feeling like I've been hit by a train/truck/bus or like I have the flu for long periods of time. – Leslie

It’s hard sometimes but since I have had lupus for so long, my family understands why things are the way they are for me. Since I’m still in a new relationship, I try to explain to the different symptoms that I am experiencing and how I deal with them to my boyfriend. He tries to understand and be there for me the best he can. I say just be honest and explain how you feel, your symptoms, and your pains. It really helps others understand you. – Kyra 

Whether you’re newly diagnosed or have been navigating life with lupus for some time, the disease will continually keep you on your toes with its unpredictability and variability. Each day, you’re learning about treatment options, medication side effects, the support you need, and your body’s abilities and limitations. No one’s lupus journey looks exactly the same, and the amount of new information you take in can feel overwhelming.

That’s why we created the National Resource Center for Lupus (NRCL) – to give you a central place to help you find and track information about lupus. Whether you want to speak with one of our certified health educators,track your symptoms,find the right questions to ask your rheumatologist, or join our LupusConnect community to engage with others on their experience with lupus, the NRCL provides you with a great starting point to learn more about lupus at your pace.