Wednesday, November 24, 2010

Off-topic Post: Top Ten things a lupus patient loves to hear.

As an antidote to my "Top ten things that will get you smacked" post, as well as the third installation in the off-topic lupus series. (Don't worry, it's Thanksgiving week, recipes will be coming soon, really they will...)

10. "Don't worry about it, concentrate on getting well." Nicest thing a boss has ever said to me. And it actually motivated me to work harder, just to prove that I'm not going to take advantage of her being understanding.

9."I have another [friend or relation] who also has lupus." This lets me know that the person has some idea what the disease is about. And occasionally it turns out that, hey, that grad student in the other department is a lupus patient too, who knew? Important note: this should not be followed by "...and (s)he died of it," or it ceases to be quite so helpful.

8. "I've been thinking about/praying for you." It's nice when people let you know that they remember that you a) exist and b) are still sick. Chronic illnesses are really wearing because they are, well, chronic. They don't ever go away, at least not entirely.

7. "Call me at any time if you need a ride to/from the hospital." (Obviously only say this is you are, in fact, willing and able to be called at any time for a ride). I've had many friends say something along the lines of, "Call if you need anything." I've had one specifically tell me I could call in the middle of the night for a ride to the ER. As much as I've appreciated the general offers of help, guess which friend I called when I actually needed a ride home from the hospital at 11:00 pm?

6. "If you're feeling up to it this weekend, would you be interested in doing X?" Bam. Perfect invitation. It a) acknowledges that these days I don't know in advance how I will feel on a given day, b) takes the pressure off of me to try to pretend I'm up to something if I'm not and c) shows that you realize that, sick or not, I want at least some vague semblance of a social life.

5. "It's ok to be upset about this." I've had a number of people say this to me when I started to reproach myself for complaining. Intellectually I know that, statistically speaking, I am one of the most privileged human beings on the planet, and having lupus is relatively minor compared to what I could be dealing with. And that is true. But sometimes, as these friends have reminded me, it's ok to stop and say, "Yes, it could be worse, but it still really, really hurts." Obviously it's not healthy to wallow in that, but I appreciate being given permission to feel a teeny bit sorry for myself every now and then.

4. "I was thinking about you, so I got you X." It doesn't have to be anything big, but hey, who doesn't love surprises? During a really bad week one of my friends bought me a 56 oz bag of M&Ms. Win! (And boy, does she know me well!) A card, a stuffed microbe, whatever... it makes a huge difference to know someone is thinking about you. Being sick is very isolating, and it's nice to know people care that you're still alive.

3. "I'm going to the store. Is there anything I can grab for you?" I would almost never be comfortable asking someone to run to the store to pick up something for me. But if someone's going anyway then not having to make an extra trip to buy a gallon of milk can save me a lot of pain, stress and spoons.

2. "I'm sorry you are so sick, I don't know what it's like, but it must be hard." Lupus patients run up against the, "Oh, I know how you feel," statement a lot, and it's frustrating. Unless you have a chronic illness of your own,  no, you don't. It's not just being sick or the pain... it's being sick or in pain for months or years at a time. So it's better when people don't try to compare our experiences to some short term illness, however severe, that they've experienced. In the end, we don't want you to solve our problems. Well, actually we would love it if you could, but we know that you can't. What we want is for you to acknowledge that we've been handed a lot more lemons than sugar for our life's lemonade, and that it sucks.

1. "May I introduce you to my single, independently wealthy and incredibly attractive friend who owns his/her (circle correct choice for lupus patient's gender and/or sexual orientation) own chocolate and ice cream company and who is particularly attracted to lupus patients?" Sadly this is not one I've any experience with, but hope springs eternal.


  1. Hello :)

    I've wandered into your blog a couple of times through Helen's, and enjoyed the posts although not commented yet.

    I'm sorry you're having such a tough time with illness, and I do hope things improve for you (will be thinking of!). And nice post too, it can be hard to know what to say, as people have either a) heard it four million times before, or b) after the 10,000th time, it becomes stale/unintentionally insulting.

    So, best of luck to you (including getting 1. above :P), and I'm going to try out that Halloween cookie recipe you posted a while back (ignoring that Halloween was ages ago, cookies are for any time of year, cough).
    Anne (Helen's sister)

  2. I totally agree... cookies of any kind are always in season!

    Thanks! I know what it's like to be on the other side; my department had a woman about my age who died of breast cancer, and I never knew what to say to her as she was going through the chemo, etc. So I thought it might be helpful for people to know what I would love to hear (and hopefully that will get somebody to say #1! Because that would be 100% pure, refined, weapons-grade awesome).

    Hope things are going well for you as well! I hear you've joined the ranks of the enslaved (grad school).

  3. Hia Sam,
    Isn't a pig when your body lets you down! Hopefully yours will behave itself again soon. Your post was brilliant and it reminded me what great family and friends I have. (I have MCS since 1993 and it can be difficult when it is bad)

    More #1's to you!

    Katherine (Helen's friend:)