Sharing the Journey: Telling Others About Lupus

The Sharing the Journey series 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.

This month, we asked Sharing the Journey participants the following question:

What do you wish your loved ones, friends, coworkers or classmates knew about lupus and how would this help your relationship with them? 

I wish people understood that lupus is an invisible disease, and I am not using my illness as an excuse to not attend an outing. I would want people to know that when we say we are tired, we are not just complaining, we are truly drained and don’t have any more spoons to give. I believe if people in my life understood more, as well as others, they wouldn’t think it’s an excuse every time. If they understood that we wish we could get out of bed, and do everything we planned but our illness sometimes has other plans for us. – Jazmine 

I think in general I would like people to just know what the disease is. I read the statistics about the general population not really understanding what lupus is or even knowing that it exists. This is very disheartening since this disease can be so devastating for many. I really want people to know that this disease can be very lonely, since you don’t “look sick”, people often think you’re completely fine and forget to check in. Maybe just try and remember to ask how we are feeling or see if we need help. Just because we are out and about trying to function, doesn’t always mean we feel okay. – Roxi 

I would love if my friends and family knew that my lupus influences my fatigue level every day. Just because I look and seem fine at 3 pm does not mean I am up to spend a late night with them at an event. I have a very limited store of energy and I have learned how to gauge how much I use and when to use it. Most nights and weekends I am pretty exhausted because I have used my store of energy doing what is expected of me at work and school during the week. Just because I do not spend time with you does not mean I don't love you! But I will do the best I can to be as present as possible when I am with you. – Becca 

I wish my family and friends really understood that while I may seem well because I’m smiling, dressed well, and working every day, that does not mean I’m well. I’m referring mostly to my fatigue. The level of exhaustion is almost incomprehensible unless you have experienced it, and that’s hard to get across to people. It’s also sometimes hard for people to understand that I’m in pain, because I don’t appear to be. Having to explain all of this anytime I need to cancel plans is draining. – Kayla 

I wish my friends and family would understand that sometimes I will have good days and bad days. Some days I’ll be weak or strong. I need that support and their understanding because they aren’t the ones that have to live with lupus for the rest of their lives. – Kyra 

I wish my loved ones, friends and family really knew that lupus determines each day. I personally do not have control over how I may feel from moment to moment nor day to day. Some days I am well enough to do the things I have planned, while other days I am unable to get out of the bed. If my friends and family truly knew and understood this, they would understand that planning is simply very hard to do. There are many days where I have to cancel, reschedule or postpone events with family/friends because lupus has changed my plans. It is equally important to continue to plan my days to allow for breaks and rest time, which can also be hard to understand. If all of our loved ones, friends, coworkers or classmates knew and understood these facts, our relationships would excel, becoming that much better!!!! – Angel 

Sometimes things go on internally in my body that I have no control over. It seems like we are always running back and forth to doctor’s appointments. I wish my friends knew how it feels to wake up and your skin has been affected by lupus – you look in the mirror and are terrified. I’m always looking for ways to cover my butterfly rash. I wish they knew that it’s very embarrassing when I'm approached and asked, “What's wrong with your face?” I try not to let it bother me to much anymore.

I wish they knew that I have ups and downs and it's no reflection of them. It is partially due to my medications. I wish my loved ones knew how much support I really need from them. Everyone thinks I'm brick and mortar, in other words very hard, but yet I have my days where I need that shoulder to cry on, that hand to hold, that ear that would just listen. I wish they knew. – Sylvia 

I wish family and friends would have an open mind when it comes to my health. Having an invisible illness, I may look fine but feel terrible. Also, my health can change from fine to needing to be in bed in a matter of minutes. That’s really difficult for some people to understand, so just trusting me and believing me when I say that I am not well enough to attend/do something shows me that you support me wholeheartedly. I know lupus is difficult to understand, and I don’t expect anyone to fully understand what it’s like. I’d rather hope that they just trust me when I tell them how I feel, and maybe ask if there’s anything they can do. Just asking means a lot! Also, even if I am not able to attend events a lot, please include me when it comes to invitations. Please let ME make the decision if I can go or not. I know it’s probably frustrating and upsetting when I have to cancel last minute, but the more you trust that I’m making the best decision for my health, the easier our relationship will be. – Nicole 
 

If you have lupus, it can be difficult for the people you love to know what you’re going through and how it can change from day to day. Communicating with family and friends who don't understand what it's like to live with lupus is one of the most challenging parts of coping with the disease.

For example, they may not understand that fatigue is more than just being tired. Or they might take it personally and become upset that you cancel plans often due to flares or fatigue. 
 
Just like it’s important to learn how to communicate well with your doctor, it's important to use good communication skills with your friends and family. It can help improve your relationships and also the support they give you. 
 
We have resources that can help you have these conversations if you’re an adult or a teen. And we have a worksheet that you can use to explain lupus to those who don’t know much about the disease.