understanding and make all kinds of allowances for my condition.
I'm also blessed with a wonderful church congregation. Even though I'm no longer able to do the part time work I had been doing with them, they still accept and love me and are happy for me to do whatever I am able.
But I hear constantly from other lupies who tell me how horribly they have been treated, because of the misconceptions people have about our condition.
So here's some of the stuff I've heard, and the truth that goes with it.
Misconception: That you can see disabilities, therefore someone who doesn't have any visible disability shouldn't park in a "disabled" parking spot.
Example: People with lupus and similar conditions (who legitimately have disabled parking permits), have been subjected to verbal (spoken and written) abuse from people who have seen them leaving their cars and decided they were "taking a disabled space from someone who really needed it.)
Truth: Lots of people with lupus, rheumatoid arthritis, and many other "invisible" illnesses do have disabled parking permits. They can only get those permits if their condition is severe enough to warrant it. (Many of us don't qualify.) Still, many of them will only use the permits on "bad days", and will park in a regular parking spot if they feel at all well enough to walk the extra distance.
Example: The person who tells a lupie they've read a book that says all autoimmune diseases are self-inflicted and you can think or will yourself out of this.
Truth: Lupus is a real illness. You can think yourself out of it as much as you can think yourself out of malaria or meningitis or AIDS or breast cancer.
Misconception: It's not healthy to take all the drugs that lupus patients take.
Example: The person who tells a lupus patient. "All those drugs are dangerous. You should stop taking them, they're making you sick."
Truth: Lupies know the drugs we take are dangerous. So do our doctors (believe it or not, our doctors went to doctor school, they know drugs have side-effects.) So, with guidance from our doctors, we weigh up the risks of the drugs against the risk of untreated lupus: pain, fatigue, organ failure, slow agonising death. If one drug's side-effects really do make things even worse than the benefit we get from it, we usually go back to our doctors to look at alternatives.
Misconception: There'd be a cure if there weren't so much money in the disease.
Example: The oft-quoted statement, "the pharmaceutical industry creates patients, not cures."
Truth: The pharmaceutical industry may be working on some lupus treatments, but a lot of other independent organisations, such as universities, are also working on treatments, understanding the condition, and hopefully, one day, a cure. Lupus wasn't created by the pharmaceutical industry, but until drugs were found to treat it, it was a death sentence. Now, for most of us, it's just a life sentence. But researchers are finding ways to cure all kinds of other diseases, so there's no reason to suppose we won't eventually get a cure as well.
Misconception: "Alternative medicines" all have pure motives while "Big Pharma" is in it for the money.
Example: "You should take an alternative instead of all those drugs. The pharmaceutical companies are just out to make money from you."
Truth: A lot of the "Alternative medicine" companies are huge, and make a great deal of profit the same as the prescription medicine producers. (Take a look at mega-companies like Swisse.) All businesses want to make money. At the same time "alternative medicine" is far less well regulated and policed than "medicine". (See the video from "The Checkout" below.)
Misconception: A better immune system would fix it.
Example: "You're sick all the time, you should take something to boost your immune system."
Truth: Lupus and other autoimmune diseases are caused by an over-active immune system. My immune system is so worked up it's attacking me! And you want to help it? (And, by the way, many of the things people take to "boost their immune systems" have either not been proven to work, or been proven to definitely not do anything of use.)
Misconception: You need more sun exposure.
Example: "You should get out in the sun more. It's unhealthy to be inside all the time. You need vitamin D."
Truth: Yes, we do need vitamin D. That's why so many people with lupus take vitamin D supplements - because our doctors (I told you they've been to doctor school and know this stuff, know to check our blood tests to make sure our vitamin D levels are properly regulated.) We do it this way because sunlight, in fact any ultraviolet light, can give lupies rashes, and make us sick.
Misconception: Lifestyle changes can cure lupus.
Example: "My daughter's friend's cousin cured her lupus by giving up coffee."
Truth: I haven't tried giving up coffee - I've had to give up so much that I'm refusing to give up that one pleasure. Besides which, with my fatigue levels, if I didn't have coffee I'd never be able to get out of bed. Lupus is incurable - for now. Researchers are working towards a cure. But in the meantime, no, giving up coffee will not cure lupus. Reducing stress will not cure lupus. Losing weight will not cure lupus. Gaining weight (for those lupies who are underweight) will not cure lupus. Standing on your head in the corner for an hour a day will not cure lupus. Running a marathon will not cure lupus - but trying it is likely to cause a severe flare.)
Misconception: We make it up, or make it out to be worse than it is.
Example: "You're not really that sick, you're just trying to manipulate everyone."
Truth: OK, my ex-husband thought I was incredibly lazy, but I divorced him long before I finally got a diagnosis. Living with lupus is a nightmare. It means constant pain and constant fatigue, when it's mild. In more severe cases it causes organ damage and failure, even death. It means never knowing from day-to-day whether you will have the energy to get out of bed, never being able to make plans and being confident of keeping them. No-one would make this up. No-one chooses to live this life. The lupies I know dream of feeling "normal". We might look like we're fit and healthy - but looks can be deceiving.