Concluding Lupus Awareness Month

You are 15 y’old when somebody asks you about your greatest fear and you answer “To suffer from a long-lasting illness”.

You are 21 y’old when the words “lupus, chronic, incurable, potentially fatal, lifelong treatment” hit you. And while you can rely on your healthcare practitioners, web resources and other patients, nothing had prepared you for your very own journey with The Wolf.

A journey made up of bruises, blood, ulcers, nausea, pain, weakness, dizziness. When your wrist and knuckles barely cooperate, making it hard to send a text message saying “I’m not feeling well”. When you want to place hot water bottles on your limbs but you can barely lift the kettle. When it takes you 30 mins and deep, deep breaths to get out of bed and reach for your medications. When you are exhausted but your ache is keeping you awake and you know that not getting enough sleep will make things worse. Ithurtsitburnsithrobs. It’s not stopping.

When you have more breakdowns that you would like to admit: because you did something wrong and got yourself sick, because you cannot attend the event you had been looking forward to for weeks, because you wish you could go back to ‘normal’. Because once again, you are telling yourself “I will never be able to do that”.

When your medications are a game of ironies, listing side effects such as: skin thinning, easy bruising, slow healing. And you smiled to how this juxtaposition alone could sum up the ‘new you’: thinning-bruising-healing.

And while living with The Wolf is making my life richer and brighter in multiple ways, it’s the difficulties which I wish to highlight to conclude Lupus Awareness Month. We talk about awareness in an effort to raise funds for research which will, someday, find a cure for this disease. But, above all, awareness is important for the 5 million of people across the globe who struggle with a disease which is greatly misunderstood.

Living in a body made up of too much this, not enough that. A body made up of rebellion.

Chiara Bautista.jpg

Illustration by Chiara Bautista

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