I joke that I am not the girl my boyfriend signed up for and that he should claim for false advertising. We met over 3 years ago when we neither of us knew what Lupus was and the words ‘urethra’ and ‘catheter’ were not part of our daily dictionary.
I remember texting my boyfriend the day I was diagnosed with lupus in June 2017 “Will you still love me if I have Lupus?” I was half joking, half deadly serious. I had no choice of having a chronic illness, but I felt my boyfriend should have an 'opt out' option – Thankfully he said he would still love me but I knew this life changing diagnosis would impact him as much as me.
He misses countless events or parties because I’m not well enough, or attends them on his own so much that people question if I am imaginary. He has sleepless nights because of my continuous bathroom trips or is disturbed by my loud audio books lulling me to sleep. He has a never-ending task of bringing my heat pack, ice pack or water/tea, only to get some respite by going to work. He gets little physical contact as I am always tired, in pain and quite often covered in stinky creams to help my various unattractive rashes. He can’t romantically run his hand through my hair without ending up with a semi-formed wig on his hand. And our once spontaneous adventures are now well choreographed expeditions with walking distances calculated and rest/pee stops planned.
Despite all this, without sounding cliché, Lupus has made us stronger.
We have been through some of the worst times together and been thrust into decisions we did not want to make. He’s been by my side (well, behind a door gagging) whilst I’ve been throwing up and he even offered to self-catheterise so he could share my pain (I told him no!). I think it is important to acknowledge the impact chronic illness has on those around us, especially for our partners who see the not-so-invisible side of things. It may not be what they signed up for, but I think they deserve some sort of 'partner of a warrior' award to show how much we appreciate their support.
Lots of love,