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: http://www.lupusawarenessmonth.org/

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 Awareness Month

It’s been nearly a year since I was diagnosed with lupus (S.L.E), a disease in which my immune system does not function properly and attacks my own body. This can cause damage to any body parts and lead to complications such as kidney failure, strokes, pleurisy or heart attacks among others. Lupus is incurable and it is believed that 10-15% of patients will die prematurely due to complications.

May is Lupus Awareness Month, with World Lupus Day celebrated on the 10th, and one super-awesome thing you can do is to simply set aside some time and LEARN about the disease. Go through a website, a patient’s blog, a video, or simply reach out and ask questions (I’m always willing and happy to discuss it!). Not only does lupus research lags behind but the illness is also widely unknown or misunderstood. Getting to know more about lupus is an easy but huge step in supporting those who live with it.


6 Ways I’m Taking Ownership of My Illness


What helps me to approach my disease more positively is accepting it as just another part of me—as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that :

1. Learning about lupus

While lupus still remains a ‘mystery’, there are a bunch of online resources which document what is known so far. (It is one of the things which make me incredibly grateful to have easy and regular access to the internet.) I try to stay updated about several aspects of the disease including how it affects different body parts, side effects of medications and what researchers are currently focusing on.

Not only did it help me to develop ways to better manage my disease, but— I’m not even sure why— it is also weirdly empowering to know what’s going on, and to be able to explain it to yourself and to others.

For instance, there were times following my diagnosis during which I wished I could get into my own body and see what’s happening in there (Thanks to watching The Magic School Bus as a kid). I had forgotten about that until some time ago, when I stumbled across a Youtube video modelling how lupus ‘works’ and had the satisfaction of being finally able to visualise what happens in my own body.

2. Reading other patients’ stories

For a start, going through social media posts from other patients helped me confirm patterns which I noticed about my lupus but which have not yet been medically proven. One such example is how I had the impressions that my periods could cause lupus flares but couldn’t find a single medical article which proves this to be true. Yet, by going through forums, I read messages from a lot of other patients who also experienced flares during their periods, indicating that this is fairly common.

Another perk of going through articles written by fellow patients is that they tend to cover more practical aspects and emotional aspects of daily life with lupus or another chronic illness. The Mighty is an interesting resource when it comes to that: with articles ranging from how to manage college life with lupus to why dogs are a great source of support.

3. Asking questions

Closely related to my first point about educating myself, is getting actively involved in the process of learning by asking questions. I usually note down questions/issues as they pop up and arrive to my appointments with a list. I’m lucky enough to have healthcare providers who take the time to address my concerns, and who admit their own limitations when it gets into an area of lupus which cannot be explained yet.

4. Proper organisation

Having my own system of medical record allows me to track my health and to be equipped with accurate information whenever I need to see a new healthcare provider. Some of the tools I use include: a diary with daily entries about my meals, medicines, weight, hours of sleep and symptoms; a file containing prescriptions, blood test results and receipts arranged chronologically; my phone, daily diary and desk planner on which I note appointment dates (and questions to be asked during those!).

5. Communicating my needs

Managing my diet, activities, sleep and other parts of my lifestyle are as important as adhering to a treatment to control lupus. It tends to be embarrassing to be the family member/friend who constantly requests “Can we do this instead of that? Because of lupus (…) “, but I’m slowly trying to get past the discomfort and the impression that this makes me a picky/annoying person. It doesn’t make sense to keep quiet about my illness and then be annoyed at people who “don’t get it” (as I initially did) or to simply opt out of certain activities rather than coming up with alternate ways in which I can participate (which I also did): speaking out is therefore a must. Over time, my loved ones have learned to anticipate and accommodate my particularities— another of those little things which make my life easier and for which I’m utterly thankful.

6. Raising awareness

A few weeks after my diagnosis, as I was browsing through ways to cope with chronic illness according to the Acceptance and Commitment Therapy, I came across the sentence “Create meaning out of your pain“. Sharing information about lupus through a blog spoke to me: it gives me another reason to learn about that topic, it can be helpful for both lupus patients and those who know nothing about the disease and— as someone who studied and works in Communications— blogging, social media management and content creation allow me to exercise my skills and do something I enjoy.

It turned out to be a great choice and, to me, few things are as rewarding as noticing that others show interest and want to know even more about lupus. Being told “I went through your post, do you mind if I ask you some questions about lupus?” is always a win!