resilience

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

Lupus and Mental Health

Lupus can be stressful and stress can cause lupus flares.  This simple fact compelled me to reconsider my definition of ‘health’ in favor of a more holistic and inclusive one which takes into consideration its psychological component. This perspective became increasingly relevant as I came across a surprising number of social media posts from fellow lupies who were mentally hitting rock bottom as they battled the disease.

From what I have gathered, below are a few of the ways lupus can have an impact on one’s mental health:

  • Living with a Chronic Illness 

Over the years, several researches have established a link between chronic illnesses and depression and/or other mood disorders. According to the Lupus Foundation of America, 15-60% of people with a chronic illness will experience clinical depression, the most common cause being “the emotional drain from the stress of coping with the complications of physical illness. Add to that economic, social, and workplace concerns.”

One notable pointer is the process of grief (Denial, Anger, Bargaining, Depression and Acceptance) as one experiences the loss of the former ‘healthy’ self.

Other sources highlight the way chronic illnesses can limit one’s involvement in rewarding activities (For instance: Lupus photosensitivity = Not being able to spend too much time outdoors during the day. Unexpected lupus flare up = not being able to attend social events which were planned a while back).

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  • Lupus Can Affect the Central Nervous System

As lupus can attack any part of the body, including the central nervous system, brain involvement can lead to depression (amongst other disorders such as mania, schizophrenia, and psychosis).  Other cognitive dysfunctions can occur, including confusion and memory loss.

  • Side Effects of Medications

Several medicines used to treat lupus – from Prednisone to painkillers – have been shown to affect the mood and sometimes cause depression.

About Stigma…

There’s a common misconception that seeking professional psychological help is a sign of weakness and the inability to take charge of your life.  Ideas such as “It is your mind, you are the only one who can sort through it.”, “Since you’re going to have this disease for your whole life, you need to toughen up and get used to it.”, “There are people who deal with worse problems than yours, and they do it on their own.”

Unfortunately, the taboo about mental health issues (like many other taboos) only worsen the situation by making people hesitant to reach out for professional help.

Cognitive Behavioral Therapy is currently helping me to see things more clearly, and tame that irrational fear of life-threatening complications, the frustration of having to give up on some activities, the anger of my body not living up to the expectations of my mind… I cannot stress enough how important it is to accept our own limitations in dealing with these challenges, and how there is nothing shameful in seeking professional assistance.

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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