I share a bit about my life with lupus, how it impacts me and a bit about the other folks in my life. The thing is, with May being Lupus Awareness month, what I want to do is shed some awareness on how my lupus isn’t just mine to cope with.
When I was diagnosed with lupus I made some rash assumptions about life based on some out-of-date opinions I had been given. What I had heard made me decide I would probably have a short life, no long-term relationships or such. Of course that was a number of years ago.
When Beloved and I met, I inelegantly announced I had lupus as though it was the elephant in the room. Beloved simply raised an eyebrow and carried on as though I had said I had a hangnail. What I didn’t know was that after we met he went home and did what he does best, lots of research.
He didn’t come into this relationship with his eyes closed. But he also didn’t count on becoming acquainted with so many specialists and hospitals. He certainly didn’t count on a crash course in biology, medical terminology and injections. Yet these are all things he has mastered, as well as reading my moods and movements to predict flares.
Beloved has mastered the art of making my apologies for absenteeism. He has become a professional at making small talk about my health without giving away a lot of information.
Regardless of all the research and such Beloved has completed, he has to learn to adapt every day to zigs and zags of lupus. When my body is in a flare, Beloved must take care of everything he does plus what I normally do and manage the four-footed one. Sometimes, when he drops his guard, I see the worry and the pain in his eyes. I notice the way he has aged and wonder about the weight he must carry because he loves me, despite lupus. How many people would be willing to love not just a person, but also an unpredictable illness that seems to take and take without ever letting up?
The thing with loving someone who has a chronic illness is that you must take it n both regardless of how draining it can be, how it can take over your healthy life entirely. It takes a special person, in my eyes, to look beyond and accept the flaws and damage of the illness as well.