It always bothers me when I hear from fellow lupies who are being treated as if their symptoms were their own fault, or are just imagined or made up.
I know my ex-husband always thought I was just lazy, but in his defence, I hadn't actually been diagnosed with anything while we were married. I just kept getting sick for no known reason, and finding I didn't have the energy to get everything done.
But the more I do this on-line lupus advocacy stuff, the more I hear from people who are just not believed when they say they are in pain, or they're too exhausted to keep going.
So let's spell what should be obvious, for the sake of anyone who really doesn't understand:
- A "positive attitude" will not cure lupus. It may help with symptoms of depression that can accompany lupus - but the way to encourage that is to teach actual cognitive behavioural therapy techniques, not just tell someone to "get over it".
- When someone who has lupus says they're "tired", it usually means the kind of tired that a month of straight sleep wouldn't fix.
- Pain for a lupus patient is normal. So when pain reaches a point where we complain about it, it's something that someone not used to pain wouldn't handle anyway.
- Yes, we plan things and then can't do them. We know you're frustrated. It's maddeningly frustrating for us as well.
- Yes, all these drugs we take can and do have horrible side effects. We know that. Our doctors know that. We still take the drugs because not taking them would be far, far, worse.
- No, we can't just drop it all and take "natural" alternatives. Those "natural" alternatives are basically untested drugs, of unknown strength and quality, which have unknown effects and unknown side effects.
- Lupus is not just an "excuse" to get out of things we don't want to do. It's a nightmare we live with every day.
- If there was a safe, proven, way to get well, we'd take it. The thing we all want more than anything is a cure.
- We did not do this to ourselves. It's not a lack of faith, or poor self-care, or anything else you might want to blame.
- However convincing the latest "cure" you read about on the internet or in a chain email, we're waiting for something to actually be proven before we risk our lives on it.
- When we ask you to get vaccinated for the flu, and to vaccinate your children for infectious diseases, it's not that we want you to be inconvenienced. For us, it's a matter of life and death.
- All those horrible symptoms you saw on "House" where they suspected lupus? Yes, lupus really can do all of those things.
- If you've ever had the flu, not just a cold, but actual life-threatening influenza, remember what it felt like. That's how we feel every day.
- If I look healthy, that's fantastic. If my body weren't at war with itself, I might feel healthy too.