I thought I would share What Not To Say To Someone With Lupus, as they may come across as insensitive.

I know this is difficult for many people because many genuinely try to help when they say these things to a lupus patient. However, they will only realise its effect once somebody sits down and explains it.

It would be best if you went Vegan, Alkaline etc

Now I know that some people believe they can heal themselves by eating in specific ways. And there are real benefits, and I also know that with Lupus, you should always keep a healthy diet, and particular foods may trigger lupus symptoms in some people and not others.
That doesn’t mean that a specific diet, such as eliminating gluten, will cure Lupus, and neither will go vegan. It may seem like this message is empowering to people with Lupus and helping them because they can cure themselves.
However also can feel like it is almost a shameful method, like saying that you know exactly what to do to cure Lupus; because you’ve read some website or some book, and your knowledge makes you know better than the person who has Lupus. The poor, sad individual who managed to eat themselves into a chronic condition and it’s their fault because they are just too stupid to find the right combination. Of course, that may not be exactly what you’re saying, but that’s how I have internalised it many times.

You are always tired!

“Yeah… Yeah, We’re all tired.”

Well, most of us are tired because most people work 40 hours a week, and some have many other commitments, including children or extra activities beyond their work. So yeah, a lot of people in today’s society are tired.
However, people need to appreciate how big the difference is between being tired and being fatigued.
Being fatigued is being so tired that you can’t even get up to take a shower, may have to rest after you get dressed, or find getting up to brush your hair nearly impossible.
There’s a vast difference between being fatigued and being tired. I think that the difference is not emphasised enough, so when someone with Lupus says that they are tired, it’s gonna be very different than you saying that you’re exhausted from running around and doing the regular stuff you usually do in a day because honestly, we wish that we could run around and do the stuff all day that you manage to do, unfortunately, most of the time it just can’t happen,

You’re too young

Hearing people say I am too young to have all these problems is also challenging. It feels like they’re invalidating me and saying that I am either making it up or exaggerating it; it also reminds me of how much I am missing out on due to Lupus.
Unfortunately, that’s our reality, and we have no choice but to deal with it,
so saying that we’re too young doesn’t isn’t particularly helpful.

Please note: I’m intent on writing this post not to shame anyone, but to encourage people to be more mindful when talking to someone with Lupus or any other chronic condition. You may find it helpful to check out some of my other posts about lupus, such as

Lupus Flare Survival Guide: Empowering Strategies for Thriving

Living with Lupus – The Lesser Known Side of the Story

Has anyone said any of the above to you if you have a chronic condition?

Please comment below

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