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

The Road to Diagnosis

June 2015:
I notice that my shoulders and wrists have been making weird ‘snappy’ sounds when I do certain moves (such as rotating them) and after some time, I book an appointment with an orthopedist. Following the consultation, a few blood tests and two MRIs, I am diagnosed with Joint Hypermobility Syndrome, a  condition which implies that my joints are too flexible and can extend beyond the normal capacity.

However, my condition is not painful or severe and at that time, there is no need to start any treatment. I am told to have the same blood tests again in six months, and come back for another appointment to check how the rheumatism is evolving.

January 2016:
As advised, I repeat the blood tests for the rheumatism but one of them indicates something which is out of the normal range.  The laboratory recommends two other blood tests, and they also indicate unusual results. At this point, the orthopedist refers me to a rheumatologist.

February 2016:
First appointment with the rheumatologist who reveals that those blood test results usually indicate lupus (Systemic Lupus Erythematosus). Yet, I have no other symptoms of the disease and thus cannot be officially diagnosed as such. (4 out of 11 symptoms are usually required for a diagnosis).

The doc’ concludes that I am prone to developing the lupus and while I should take several precautions (such as avoiding exposure to the sun), at this point, he does not recommend starting any treatment. Since lupus medication can have serious side effects, it is not advisable to take them unless really necessary. He further proceeds to explain to me the symptoms of lupus and asks that I come to see him immediately if they start to appear.

On the other hand, he notes that I have a mild scoliosis, meaning that my spine slightly bends to the side.

July 2016:
Without any apparent reason, I start feeling quite unwell:  achy joints and muscles, fever, mouth ulcers, nausea, dizziness, extreme fatigue… I spend most of the time in bed or curled up on the couch, realising that these might be symptoms of lupus.
A few days later, I see the rheumatologist and he confirms that “the lupus is getting active“.

That was the turning point: pills, lifestyle changes, regular blood tests, appointments, new symptoms, side effects from medication, emotional ups and downs, this blog…

Lupus is often nicknamed ‘the great imitator’ for the way it resembles other diseases and is often mistaken as such. I consider myself as being among the few and very lucky ones who were diagnosed early, as opposed to lupus patients who suffer for years, going from one doctor to another, before being finally able to put a name to their condition.