Friends, family, colleagues, caregivers, medical staff or anyone who deals with or has someone in their life with lupus, this article discusses how you can lend lupus support.
If you have someone in your life who has lupus (or another chronic illness), please read on and share. This is about what to say and, more importantly, what NOT to say to us and how you can lend support to someone you care about who has lupus.
The number one thing you should never ever say to someone with lupus (AKA lupie) is, “Well you look good”. I know firsthand that other lupies (myself included) absolutely despise this expression, so please don’t say that to us. I’m begging you. In fact, I would refrain from saying that to anyone with a chronic illness. Why? Because saying, “Well at least you look good,” completely diminishes the root issue of the fact that we have lupus, how we are feeling, and the struggles we are going through, which can be life threatening at times.
Here are some suggestions of what is appropriate to ask or say:
- How are you feeling?
- What is it like to live with lupus (or ___________)?
- What do you deal with on a daily basis?
- I’d like to give you a million dollars to take the edge off of your pain.
- I’m kidding with my last suggestion, but if you want to give me money, I’ll accept. Seriously though:
- Is there anything I can do to help you?
- I’m here for you if you need anything.
Living with lupus generally means there are times when a lupie is doing quite well, interspersed with periods of disease flares. The 
flares can last anywhere from a few days to a few months (or more time in extreme cases). During these flares is when a lupie may need the most help and support, which can come in many forms.
Here are some ideas on how to help:
- Check in with the person who has lupus: phone call, email, stop by their house, etc.
- Ask what they are going through and how they are feeling.
- Ask what you can do to help.
- Offer to make a dinner and drop it off at their house.
- Offer to go grocery shopping or run any other errands.
- Offer to help around their house with cleaning, laundry, etc.
- If it’s a long flare, check in with the lupie more than once (maybe weekly).
- Send a card, happy email, flowers, something to cheer them up.
- Offer to come to their house and watch a movie with them.
- Offer to make me my favorite dessert, molten dark chocolate lava cake, and drop it off at my house. Kidding (sort of)
Lupus is not always outwardly obvious, but this in no way represents a lack of physical turmoil that may be happening within the body. Please don’t diminish the effects of lupus, by only looking at us superficially. Please realize that lupus is hard, sometimes extremely painful, and every now and then devastatingly brutal to live with, which is usually not apparent.
The most appreciated support I receive comes from friends and family who understand what I am going through. They know, because they 
asked me. Even better is that they accept my lupus limitations. I’m not always reliable because of this disease and they understand. I often have extreme fatigue leaving me without energy to do much more than watch TV. I have periods of migraines and depression. If you have someone in your life with lupus, or any chronic illness, ask them what they are dealing with and how they are doing/feeling because lupus and chronic illness affects each person differently. Asking them shows that you care. Please take it one step further and inquire as to how you can give them lupus help. Most importantly, remember to never, ever, ever say, “Well, at least you look good”. We cringe when we hear this.
