Tuesday, May 31, 2011

“So, are you all better now?”

[Edit: Just to be clear, asking if a lupus patient is feeling better is fine. What irritates us is when you ask if our lupus is completely cured and/or gone away. Lupus is incurable, so the answer to the question will always be no.]


            As Lupus Awareness Month draws to a close, I found myself trying to decide what single aspect of lupus I would most like my healthy friends and family to understand. It’s not a simple question, really. Lupus invades and influences every aspect of my life. Perhaps that fact alone would be the one thing I’d like people to understand, but it is extremely difficult to describe to someone who is not chronically  ill. So I decided instead to answer a question which I am almost invariably surprised at being asked, and whose answer almost invariably surprises the person who asked...

 “So, are you all better now?”

            People who have not seen me for a while tend to ask this. They are usually shocked to hear that, no, I’m just as, if not more, sick as I was three, six, or twelve months ago. Their surprise is totally understandable; most people get sick for a couple of weeks, spend another week or two getting back up to full speed and then are fine until the next illness. The assumption that illnesses are troublesome but of finite duration is one of the major differences between the mindset of the healthy and the mindset of the chronically ill. So, while it is perfectly appropriate to ask if a lupus patient is feeling better, asking if (s)he is all better will instantly tell the patient that you really do not understand the nature of the disease.

            No, I’m not all better. I still have lupus, and I still depend on the “Better Living Through Weekly Self-poisoning” treatment plan. I still hurt. I still cannot go out in the sun. And the thing that most people don’t fully grasp is the fact that I’m always going to be sick. There are no cures for lupus. None. Treatments theoretically (and sometimes really do) bring the disease under control, but it’s always there, and it can become resistant to any given treatment at any time. There is no diet, exercise plan, conventional or alternative therapy that will make lupus go into remission or prevent its coming back if it does. My life is, and always will be, dependant on how the autoimmune dice roll. 

            A related aspect of lupus that seems to puzzle healthy people is the “Yet” factor. No, I do not have kidney involvement…yet. I do not have a malar/butterfly rash…yet. The symptoms of acute illnesses tend to be more predictable. Strep throat, for example, will generally cause a fever and a sore throat. It’s unlikely to cause one’s big toe to be inflamed. Lupus, on the other hand, can easily cause both, and throw in heart complications while it's at it. And, unfortunately, just because I don’t have symptom X today doesn’t mean I won’t tomorrow. So when I am asked if I have major organ involvement, central nervous system involvement, etc., the answer is never definite. It always has a “…yet” or, “…so far,” or even, “…as far as I know” tacked on at the end. And it always will.

            Most of this probably sounds like I’m wallowing in melodrama or pathos, but honestly I am not. Autoimmune diseases are currently incurable, and very little research money is allocated to their study.  Lupus is a relapsing/remitting disease, and while definite triggers can be identified, nobody really knows why  it comes and goes as it does. Lupus is also an almost infinitely variable disease. Once the self-tolerance of the immune system is broken, any part of the body may suddenly be targeted for destruction. So a lupus patient really will never be “all better,” nor will his or her disease always attack the same organs.  Lupus sucks, and until or unless more money is spent and a true cure is found, it always will.

5 comments:

  1. Hi sam, im sara. I have crohn's disease, which is also an auto-immune disease. I love your promotion of awareness, as i try and do the same. I tatooed a purple ribbon on my arm, and whenever someone asks me what its all about, they get a mini info session abotu crohn's disease. I also tell them that the purple ribbon is a shared awareness ribbon, with Crohn's, Colitis, Lupus, fibromyalgia, domestic violence, and a few others. I too, have people asking me how im feeling all the time, i know its because they care, but it gets tiring. Because ive lost so much weight, i get: "oh you are looking so great!!". I too have major joint pain, take medications that dont allow me to go in the sun. The sun also gives me a rash. I also have some of the symptoms of lupus, like rash, joint pain, cuts in my nose that dont heal, and bleed, and a positive ANA of 1:640. no lupus dianosis though. Thanks for sharing your story and spreading awareness, i will continue to do the same. hope you can find some treatments to help you feel better, and slow down the progression of disease. Keep fighting!! ~sara

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  2. Hi Sara, I'm glad that you like my articles. I don't feel like I do very much lupus awareness promotion, but I'm trying to get better at it. Oddly enough, I'm very familiar with Crohn's disease because my mother has it (she also has SLE). It really sounds to me like you've also got both, but of course I'm not a rheumatologist. I am, however, a 5th year doctoral candidate in microbiology & molecular genetics, and I did my M.S. work in immunology. If you ever have any questions about the science behind autoimmune diseases please don't hesitate to ask. I enjoy researching answers for people in my online lupus group, and would welcome the chance to do so for others as well. (I don't know your background; if you're a biologist or a physician then you probably already have way more answers than you want!)

    If I'm being totally honest, I have a love/hate thing going on with weight loss. On the one hand I know that losing weight from nausea because of chemo and the like is bad (as I'm not at all overweight). On the other hand, of all the symptoms I have to put up with, that's gotta be my favorite. But it always strikes me that we have a seriously messed up culture when people are complementing me for, essentially, being too sick to eat properly. Go figure.

    Sam

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  3. Sam, I do not think you are wallowing in self pity or melodrama, but I have some experience living with this existence. When I ask if you are better it is normally just wanting to know if things have improved for the moment, or just how bad have the last week or weeks truly been. Is there a better way to state that question that is less offensive?

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  4. Oh, you don't have anything to worry about. I don't think I've ever been offended by your asking. As I said, asking if I'm feeling better is totally fine. It's the blithe assumption that I must be "all better" after a month or two that makes me roll my eyes.

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