Loop-da Lupus Life

It’s another one of those days where we have things scheduled that are simply not an option for me to attend. Not tonight. So Beloved will go alone, as he has so many times before and he will make the same apologies that he has made so many times before. Indubitably, he will come home much earlier than if we had gone together and he will tell me he had a so-so time and then sit down and tell me about all the wonderful things that happened.

You see Beloved’s eyes give him away every time. He cannot, for the life of him, down play something when he is excited or has enjoyed himself. Long after his feet have stopped moving and the music has fallen silent, his eyes are still dancing.

And there will be a part of me, a small yet loud part of me that will protest that he has been able to enjoy himself so much. This tiny piece of me will do what it always does, which is wonder why he could enjoy himself so much while I am at home dealing with my ever-changing health.

But the heart of the matter is not that I resent him or his health. It’s that I resent not being able to be normal all the time. I resent missing out on things just as much as I resent having to rely on others for things when I am not at my best. I resent the uncertainty that comes with having lupus. And I resent having to be so darn strong for everyone else around me.

Foolishly I act as though their happiness depends upon me being strong, being “normal” and able to manage no my own. Of course I know better. Of course I figured this all out a long time ago, and while I understand it all logically, I will never understand it fully at the emotional level. Not in those moments of resentment.

Of course there are other moments too, such as gratitude for having such people in my life that will help me carry the heavy loads, even when I fail to ask for help. I appreciate those people who step in; even if it means that I might bite their heads off for offering help and then ungraciously accept it. I appreciate those people who understand that sometimes Beloved has to go solo even after we accepted as a couple. I appreciate those people who make this all so less awkward than it could otherwise be.

And I find that as time rolls on, the struggles to be normal are harder, I find myself being more tender with myself. More careful. More likely to forgive myself. After all I am not lupus. I am just a damaged person trying to hold things together as best as I can while lupus seems to dismantle me a portion at a time. And somehow, throughout this entire mess, there is healing through love, acceptance and yes, Beloved himself.


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