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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