30 Things About My Invisible Illness

On the occasion of World Lupus Day, celebrated this 10th May, I reveal 30 things you may not know about my invisible illness.

  1. The illness I live with is: Systemic Lupus Erythematosus (I also have Joint Hypermobility Syndrome and scoliosis!).

  2. I was diagnosed with it in the year: 2016.

  3. But I had symptoms since: Weird fact : In February 2016, blood tests indicated that I had lupus, but I had no symptoms at that time. The symptoms appeared a few months later, in July 2016.

  4. The biggest adjustment I had to make is: Pace myself. Fatigue is a constant symptom, and things get worse if I ignore it and push myself too hard. I have to carefully plan my activities and systematically include periods of rest in my schedule.

  5. Most people assume:  not much, most people do not know about it.

  6. The hardest part about mornings are: Waking up and realising it’s a bad flare day. It feels like blocks of metal have been placed on each part of my body including my forehead, throat, stomach, arms, legs… and it requires a tremendous amount of effort to simply get out of bed and reach for my medications.

  7. My favorite medical TV show is: House!

    When the team tries to figure out what’s wrong with a patient, someone will usually suggest that it might be lupus — probably because it is difficult to diagnose, because it has a wide range of symptoms or because it affects several parts of the body simultaneously — but “it’s never lupus”.
    (Except in Season 4, Episode 8):

  1. A gadget I couldn’t live without is: Does my blanket count as gadget?
  2. The hardest part about nights are: Painsomnia. Being exhausted but too achy to fall asleep.

  3. Each day I take: 2 or 4 pills (I take some medications on alternate days).

  4. Regarding alternative treatments I: think they can be as important as medication, but it’s all about finding out what works for you or not.

  5. If I had to choose between an invisible illness or visible I would choose: I wouldn’t choose —I don’t think that there’s one type of illness which is preferable to another.

  6. Regarding working and career: I am lucky enough to be able to work full-time (which is rare for lupus patients). Lupus has positively influenced my choice of career as it encouraged me to reconsider how I really want to allocate my time and energy, and I developed a keen interest in non-profit organisations involved in healthcare.

  7. People would be surprised to know: that being in the sun can cause a lupus flare.

  8. The hardest thing to accept about my new reality has been: The unpredictability of lupus. I still have to get used to the idea that we cannot know how my lupus is going to evolve, which part of my body might be affected or how my life expectancy is impacted.

  9. Something I never thought I could do with my illness that I did was: live with it.

  10. The commercials about my illness: are non-existent!

  11. Something I really miss doing since I was diagnosed is: being in the sun.

  12. It was really hard to have to give up: certain ideals which I had assimilated as my own — thinking that my worth could only be determined by my productivity, that being ‘limited’ made me boring, that being sick made me unattractive and so on. It takes a daily amount of work to slowly get rid of that type of social conditioning.

  13. A new hobby I have taken up since my diagnosis is: blogging and learning about other health conditions.

  14. If I could have one day of feeling normal again I would: spend hours swimming while the sun is out.
  15. My illness has taught me: to slow down and open up.

  16. Want to know a secret? One thing people say that gets under my skin is: “You should not be eating that.”

  17. But I love it when people: ask questions or say that they’ve been researching my condition!

  18. My favorite motto, scripture, quote that gets me through tough times is: The song “Fix You” by Coldplay.

  19. When someone is diagnosed I’d like to tell them: Trust your own pace. It’s okay to go through a period of grief, do not expect to “think positively” right after being diagnosed with an incurable and potentially lethal condition. Listen to your body and speak up for yourself; you’ll receive a huge amount of (sometimes unsolicited) advice but you are the only one who knows what you are going through.

  20. Something that has surprised me about living with an illness is: how much you can feel that you are not ‘suited’ to live in this world, and how many efforts it can take to function in it.

  21. The nicest thing someone did for me when I wasn’t feeling well was: filling my hot water bottles, cooking something special, coming to see me at my place because I couldn’t go out… There’s an endless list of lovely things that my family and friends do.

  22. I’m involved with Lupus Awareness Month because: I hope it help others better understand lupus patients and their needs — I myself didn’t know about the disease before diagnosed, and it’s commonly referred to as a “cruel mystery”.

  23. The fact that you read this list makes me feel: grateful!

First video!

Well, hello!
I received a bunch of questions about lupus and I decided to make a short video to answer them. I speak in Mauritian Creole, and there are English subtitles:

Remember that Lupus Awareness Month is just around the corner! Here is how you can help:

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.

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.



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

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).


  • 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.


  • 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.