blogging

Blue.

I’m not sure from where the urge of sharing this stems, or even what’s the point, but tonight it felt important:

For the past few months, my lupus had been flaring up more frequently, and I suffer from a Vitamin D deficiency. Apart from the physical symptoms, my mood took a serious blow. I don’t know if it’s simply the result of feeling almost constantly physically unwell (just imagine how cranky you are when you’ve got a headache or tooth pain). It might also be that both lupus, lupus medications and Vitamin D can affect the mood, or even cause a depression. Reading and watching videos about Selena Gomez’ kidney transplant also shook me.

Anyhow, I kinda struggled with feelings and thoughts ranging from no longer wanting to ‘participate’ in this world, to wanting to hurt every single healthy person I knew. Let’s not even get started about nightmares about open wounds or bones breaking.

The hardest however, was how it all affected my self-perception, playing with all sort of weaknesses and insecurities. “You are quite a boring person already, it’s gonna get worse since you are limited in what you can do. You’ll never be one of those people shaped by a range of extraordinary experiences”, “You’re not smart enough. And now that you have to spend most of your time sleeping, it also means being exposed to less information, and losing any trace of critical ability which you might have”, “Seriously, look at this person handling a full-time job, a university course, a creative practice, sports classes, a social life etc etc while you feel exhausted by the simplest task.”

These thoughts do not disappear overnight, since they are often rooted in deeper issues, from past emotionally abusive relationships to years of being made fun of about one of your physical features. It takes a lot to feel whole or accomplished as a person with a disease which gives you the impression that it keeps ‘stealing’ things from you. Or to deal with feeling like you move in slow motion when everything around you is so fast-paced.

It is also hard, to speak up about those insecurities or those ‘’things in your head’’, but I was lucky to be able to pick up the phone and reach others with “My lupus is really bringing me down. Can we talk about it?” because I am surrounded by very patient persons. And I think the world needs more of these people.

So yes, that might be my call to action:

  • Do not assume that “Try not to think about it / to think positively” instantly solves shit.
  • Stop circulating the idea that seeing a psy is a waste of time and money because one should be able to “handle their own problems”.
  • Do not claim that we can do everything on our own.
  • Be careful about the way you give unsolicited advice.
  • There’s no pride in claiming “mwa mo dir kiksoz kare kare” (I speak frankly) to justify being aggressive or inconsiderate. Being kind is not sugarcoating stuff. Being kind does not prevent brutal honesty.
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All is not lost yet — YOUTH SCEAL

I talk about the implications of being diagnosed with lupus in my early 20’s on the Youth Sceal blog.

When were you diagnosed with the disease? What is the disease, how does it affect your body?
I was diagnosed with lupus (Systemic Lupus Erythematosus) in July 2016, at the age of 21, and like many other patients, I didn’t know about the disease before my diagnosis.

via All is not lost yet — YOUTH SCEAL

Delivering My First Presentation on Lupus

Earlier this week, I took the leap and went for something which had been at the back of my mind for a while now: deliver a presentation about lupus in my workplace. Though I still have a lot to learn about this disease, I talked about its symptoms, flares, possible complications and treatment options.

My presentation was followed by a Q&A session which turned out to be a beautiful moment of sharing. We addressed a range of topics, from the purely medical — such as tests used to diagnose lupus or side effects of medications— to more personal ones including how my colleagues can help me on a day-to-day basis, or the emotional impact of living with an unpredictable disease with potentially fatal complications.

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While I initially felt a little awkward to stand in front of a group of persons and talk about an illness which disrupted my life, it ended up being an incredibly enriching experience which further fueled my will to raise awareness about lupus. The month of July marks my first lupus diagnoversary, and this session proved to be a real gift.

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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.

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Illustration by Chiara Bautista