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.
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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.
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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.
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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,
Zoe xx