living

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

The Bright Side of Chronic Illness

Being chronically ill is a sort of perpetual upheaval in which unexpected physical changes are accompanied by their load of anger, confusion and fear. Yet, through all of that mess, my illness is also causing my perspectives to shift on several levels, and is helping me to grow in ways which I would not have suspected. Above all, it is a process of learning, changing, discovering and finding reasons to be grateful:

  • Living more fully

Having your health at stake forces you to develop a clearer sense of priorities – defining what are the things which matter to you and make you happy, and progressively drawing boundaries to keep away from the petty, toxic and unnecessary ones. Your well-being climbs up to the top of your priorities.

You also become greedy for life, seeing it as a one-way ticket for a trip and wanting to make the most out of it. And because you abruptly realise that nothing can be taken for granted, you learn to savour the tiniest things and allow yourself to feel more deeply.

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  • Redefining relationships

As you are limited in physical and emotional energy, you instinctively distance yourself from people who are not worthy of your time. Besides, talking openly about your illness exposes the vulnerable, not-so-glamourous parts of you, and invites people to decide for themselves whether they can deal with that, and how far they want to be involved with you or not. Progressively, your circle shrinks, and you are left with the ones who are ready to stick with you, who care and on whom you can rely on.

And as you have this growing notion of how fragile life is, you’ll find yourself cherishing quality time with your loved ones, craving honest conversations, hugging more often and knowing how important it is to let others know how you feel about them.

  • Learning to love your body

It might not function properly, and people will always remind you that it doesn’t look as good as the general beauty standards expect it to… But that body is a fighter: battling everyday against an illness which doctors, scientists, researchers and all the brightest minds still struggle to understand. Even when it is exhausted, it refuses to give in to your disease, and that alone is enough to make it worthy of love.

  • Fragility breeds strength

Managing your disease requires you to be cautious about things which appear insignificant (not to say ridiculous) such as avoiding the sun, not eating spicy food or making sure you don’t get bitten by insects. While this can leave you feeling frail and tiny, your illness will also make you disciplined, brave, and resilient.  And regardless of how often you’ll think “That’s too much” or “I’ll never get used to that”, you’ll find unsuspected resources within yourself to deal with whatever lies ahead.

  • Being your own advocate

Living with an illness which is unknown by many implies that you will have not only to explain but also to argue – making it a point to state what things are right for you and what makes you unwell, saying no when needed, hustling and changing things around to create more comfortable patterns in your environment, re-asserting the validity of what you feel when they are imperceptible to others, and too often, having to challenge negative assumptions about the way you live (“I am not just lazy, lupus fatigue is one of the most common symptoms…”). You will find yourself able to communicate your needs more clearly and having the opportunity to educate others about your condition.

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