Showing support to someone suffering from Lupus can be tricky and confusing to navigate at first. But once you realize it’s only as hard as you make it you won’t have to think twice about how to show support. So how can we show support to someone with Lupus?
Before we can support something we must understand it, so what even is Lupus and how does it affect one’s day-to-day life?
What is Lupus?
Lupus is an Autoimmune disease where the body attacks itself mistaking healthy cells for foreign invaders.
Now that you have the cliff notes version of Lupus and what it can look like in day-to-day life we can dive into how to support someone with lupus. And that starts with digging deeper.
Daily struggles for people with Lupus
- daily task are difficult to those living with lupus (ex.maintaining basic needs like showering)
- pain
- joint stiffness
- brain fog
- butterfly skin rashes
- etc.
Common Lupus triggers
- sun exposure
- stress
- overworking yourself
- extreme exhaustion
Do your own research
To understand you need to do your own research. This also is a huge jester that shows you care. When anyone has researched my diseases and doesn’t bring it up until further down the road/ casually in a conversation. I always know that they really care and are there for me. It’s hard to put into words how much it means when someone puts time and effort into wanting to learn and understand not only the disease but the daily struggles you live with.
Learning more about the disease can help you recognize symptoms of a flare and better understand day-to-day life living with a chronic illness. Managing Lupus is a daily struggle and having someone else there who understands the disease can help you realize when you’re overworking yourself, need to take care of yourself, need a break, or recognize a need. Is more than helpful and always appreciated in my experience.
Having that person who is there with you is extremely rare to find. Most people with Autoimmune diseases are labeled the “bad friend” or the “unreliable” friend. Which leaves them isolated. Once I realized someone who is really your friend will want to understand your disease not shame you or be mad for the symptoms you deal with daily. My life got a lot easier and I realized someone who wanted to be in my life would be there for me and my disease. Doing your own research also helps you to not take personal offense when plans are canceled last minute etc.
If you even want to go a step further and learn how to combat struggles people with Lupus face. I have a few articles you can check out!
“Cleaning hacks for people with chronic illness”
Ask how you can help
Let them know that you are there to help them with whatever they may need help with-
You may feel like they should know they can ask you for anything but there can be a lot of shame for lupus patients asking for help. Lupus can make basic tasks difficult and many adults don’t want to go out of their way to ask for help with basic needs. Extending your hand and letting them know it’s no big deal goes a long way and helps them ditch the shame that comes along with needing help. Think of it more as breaking the ice by communicating clearly. It’s easy to think they should know to ask but extending your hand and putting in that little bit of extra effort to make sure they are comfortable will help build trust and show you are a safe person they can share their disease struggles with.
Check-in on them
Constantly checking in and being there for someone will make you a safe person. The constant ups and downs of daily symptoms being there consistently even if it’s once a month will mean the world to someone struggling with Lupus. It can feel like you’re alone fighting every day so having someone who is there with you time after time helps you know you’re not alone.
Learn effective communication
One of the best skills I’ve ever learned is how to communicate effectively. Communicating effectively is patient, respectful, listening to understand, not responding, and not something you can learn in a day. It’s something I still work on every day but since I’ve made a conscious effort to work on communicating my life has gone a lot smoother in any aspect. When It comes to trying to navigate how to be there for someone with lupus if you’re good at communicating you should have no issues navigating the relationship.
Treat them the same as pre-lupus
I’ve had a lot of people who just didn’t know how to act around me anymore. Every conversation was Lupus-filled and not in a productive way. A Lot of “friends” I had like that slowly one by one lost touch. Lupus doesn’t take away the person that was there before. Find something you and your loved one connected on before. Even if there has to be modifications to the activity you can still connect and leave the Lupus out of the activity.
Little gestures
If you really don’t know what to do but you want to help you can make them a flare kit. This is probably one of the most thoughtful gifts I’ve ever gotten. However, it wasn’t called a flare kit but that’s essentially what it was. Basically, find a hobby that you can do while in a flare-up. Something sitting down, easy, and won’t exert you. Click here to check out a post I wrote about “Hobbies for chronic illness flare-ups”. But this doesn’t have to be expensive. The gift I got included a watercolor painting book and watercolor pens. It was the perfect activity for while in a flare and was under $20.
You don’t have to give gifts to show your support and love for someone but if you’re wanting to do a little extra, here are a few small ideas that could brighten someone’s day with lupus.
I always focus on activities that don’t exert a lot of energy so they can be done in a flare.
- plant
- coloring book
- book
Little gestures like reaching out, doing your own research, and openly communicating mean the world to someone struggling with a chronic illness. You don’t see much support when you live with a chronic illness. Showing you are there and supporting your loved one with Lupus doesn’t have to be a grand gesture. It’s the little things like a quick “how are you feeling text”, or “Anything you need help with” that mean the most. Let us know ways you’ve found to support your loved ones with Lupus in the comments!
