Lupus and the art of carrying on a conversation

At a recent lupus support group meeting, I listened to a friend of mine describe the tall order of trying to enjoy an evening out with friends while in a flare. Boy, do I remember those days.

She was explaining how difficult it can be to a) get dressed for the occasion (a painful, grueling task in and of itself), b) make the trip there, c) arrive with a smile on your face, and d) attempt to sit upright during a meal when it's painful to chew, you're not hungry, and you feel absolutely awful. All of that, she explained, was taxing, yes. But the most exhausting part for her? The kibitzing, the chitchatting, and the catching up. She said simply carrying on a conversation - attempting to follow what others were saying, processing their comments, and then trying to chime in with her own two cents - was beyond her capabilities.

In 10 years with lupus, I've never heard anyone say that before, and yet I couldn't agree more!

I remember so many evenings out with friends where I would sit completely still, not uttering a word, in fear that I would zap my energy too early on in the evening and have to leave before making what I felt was a proper attempt to socialize. As I struggled to keep my eyes open, much less my ears tuned into the conversation, I would try to smile in agreement every once in awhile, just to convince myself that I was actually taking part in the evening. But the idea of actually responding to a question or participating in the conversation was out of the question. It took every ounce of energy I had just to be there - formulating a sentence was not an option.

What an awful feeling it is not to be able to count on our bodies to go the distance...but how ridiculous that we ask our bodies to perform when they're simply incapable of doing so in the first place. I personally had no business being out and about when I was sick. I belonged in bed, resting, and recouping - not trying to prove to myself or anyone else that lupus wasn't going to keep me down.

And, thankfully, after years of living with lupus, I've learned that it's okay to stay home. It's not about logging social hours, or pushing your body to do what you think it should be able to do - it's about taking care of yourself today so that you can be around tomorrow.

I now understand that in turning down an invitation to dinner, I'm not letting lupus win - I'm just acting responsibly. I'm choosing to live well - and I certainly sound smarter doing that than I do sitting around a table not saying a single thing. How witty can silence be, you know?


Brecken said…
I needed this SO much this morning! In my prayer journal this morning I was just asking God for his grace in this area. You bless my life with so many of the issues that you write about and give me wisdom where I have such doubts and insecurities!! Thank you!!
Anonymous said…
Boy, can I relate to this also! Not only is it hard to join in on a conversation, but every, single, darn time, I will be asked, "So what have you been up to?" The worst part is, if I'm really going to be honest and tell them how, I've been hurting, fever, chills, I would have to launch into my "Star Wars Defender Mode" (SWDM for short) because it's always a segway into, "hmmm, maybe if you got out more and did something, you'd feel better" and the ole, "well, you sure do hide it well". UGH! Either way, it's a loaded question for us Lupies, and no matter how we answer, it's either considered complaining or being lazy. I for one, am so exhausted from always being so defensive, towards the ones that SHOULD be caring the most. Come on, my friends, don't make me have to explain this to you, for the umpteenth time!!!!

Butterfly Kiss said…
Wow...such a blessing! I find myself struggling in this same area. But I have chosen to alienate myself rather than force myself out in social situations. It is so hard to try and be there when I am so physically and mentally exhausted. With school and work I don't have the energy to socialize. It has caused family and friends to think badly of me, but they just don't understand.
Thanks so much for sharing, I don't feel so bad now!
Sara Gorman said…
Brecken - Glad the timing was good for you! Thanks so much for sharing your thoughts - best wishes to you and keep up those prayerful conversations. You'll be able to work out the majority of those insecurities, I guarantee!
Sara Gorman said…
Anonymous - Dealing with those around you is such a juggling act, isn't it? I know all too well how tricky it can be to field those questions (and comments.) At least you now know you're not alone!

If you can resist, don't waste one more moment defending your took me far too long to pick my battles. I wish you the best in choosing yours wisely!
Sara Gorman said…
Butterfly kiss - Glad you feel vindicated! You shouldn't feel one ounce of guilt for making the decisions you have to re: social obligations. Glad you stopped by and shared - if you're not able to get out and about, at least you're connecting with others online. Knowing you're in the right and not alone should keep you feeling good inside!

Take care!

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