I haven’t really spoken a lot about my lupus, this whole blog was mainly about my dysfunctional reproductive system and the problems it brewed up. But, now I have realised that Lupus needs to be spoken about, because it is more than joint pain and fatigue, it is toxic to the mind.
If you speak to anyone with lupus, we will say we have pain, we are constantly exhausted and the sun/heat near kills us… oh and we are great at taking meds, due to the fact we take a magnitude everyday. What is often missed out is the psychological pain that you experience, whether that is out of tiredness or the things you miss in life or in yourself.
For me, I can’t really remember what it was like to feel well, to be able to even walk upstairs without a pain in my knees. To be able to sit and feel the sun’s warmth on my face. To go to the gym and not feel like you’ve been dragged through the pits of hell the next day. I could go on forever about physical aspects of pre-lupus life that I miss, it takes a huge emotional toll on us. For me, I look at these beautiful girls my age, slim, pretty, the world their oyster… meanwhile, I struggle to look at myself in the mirror without finding faults with myself. The cortisone ‘moon face’ I have, that makes my double chin stand out like no tomorrow, the swollen fingers, knees and weird weight distribution. I am not saying that these beautiful girls don’t have moments like these, but it is the lupus and medications… medication I desperately need to live and feel ok… that have taken so much self confidence from me.
My favourite neologism/metaphor for lupus is the spoon’s theory by Christine Miserandino. It came about when a curious friend asked about what it was like to live with lupus, or a chronic illness. Miserandino grabbed a bouquet of spoons at the restaurant and handed it to her friend, stating that people without chronic illness usually have unlimited energy and potential opportunities (100’s of spoons), but for someone who is unwell, those spoons represent the amount of energy you can spend in one day, lets say 15-20 of them. The two girls went about their day and slowly the amount of spoons started to decrease with every activity, getting out of bed, going to work/uni, cooking dinner, personal hygiene, everything caused a decrease in spoons, with no spoons remaining at dinner time, the friend broke down and asked how she managed everyday. The answer is, we have to, its not going away, we have chronic conditions, they are here to stay, you just have to deal with it. Some days are easier, little less pain and you feel like you can take on the day….. other days every joint in your body aches and you think to yourself… “If only I had a catheter right now, I would put it in myself so I don’t have to get out of bed to wee”.
Using the spoon theory, relationships suffer too. Every person you love and care for deserves a spoon, some of that energy, but sometimes the spoons are scarce. You try so hard to catch up with friends and family, but your energy, like a fuel tank is on E for Empty and that light is god damn flashing at you. You can’t help but feel a sense of guilt for the things you put those you love through. Whether that is constantly worrying your Mother and Father, as well as borrowing money for specialist appointment and crying on the phone, or your boyfriend, who you can’t help but feel as though would be better off with someone who had a magnitude of energy, someone who isn’t broken, a non moon faced, perfect girl. I am grateful that I have these amazing people around me, but I feel guilty that they have to experience a slice of lupus too.
All we want to hear is how much of a good job we do. How much we are loved, appreciated, some validation. Although we are not who we used to be, that pre-lupus person is in there keeping us from totally losing ourselves. Check up on your friend who has a chronic illness, not just asking how their physical symptoms are, but how is their mental health? They may need to vent, like any normal human, we all have problems we need to rant about and it is that support that gets us through.