The Forgotten Ones – Those Battling Invisible Illnesses Amidst a Very Visible One

By Zhayra Escalona

In my vocabulary, there is a word that is extremely important. It is a word that probably has not even been heard, let alone seen, by most people in the Western world. 

Now imagine my surprise when I saw it being thrown about on social media unlike ever before. My dread as I saw it plastered all over all sorts of articles published by all sorts of different news outlets around the world. All this while becoming harder to come by in pharmacies, not making its way to us who need it on the clock. 


For many years I have loathed this word. I have loathed it because it is plastered on a package full of dread. Branding the pills I am supposed to take in hopes of managing. Managing, because I have long given up on the idea of it fixing anything, especially since it often messes up more things than it takes care of.

Yet Trump is calling it a cure

There is a very visible illness plaguing the world: one that while affecting us all, is particularly devastating for those that are immunocompromised

Immunocompromised: Having a weakened immune system, meaning a reduced ability to fight infections and other diseases.

The pandemic has brought about many concerns. But for us, the immunocompromised; the imminent absence of the pills essential to keeping us here definitely makes for one of the things topping the list.

Plaquenil, the commercial name of hydroxychloroquine and its older, meaner sister, Paralen, have shown some anecdotal evidence in shortening the lifespan of the COVID-19 virus in patients with severe symptoms. Sensationalising the latter resulted in the news quickly spreading, and people all over the world attempting to get their hands on the “miracle drug”. What they do not share is that the “evidence” comes from a very small-scale experience in a hospital in Marseille, a study which has been amply criticised due to the questionability of the methods: the drug is dangerous.

We would know – all of us, the people forgotten by the system because we do not look sick enough to be acknowledged. While this is a problem that is constant, but has become an awful lot more visible now. Now that our drug is taken away, leaving us completely defenceless. And even saddened to a certain extent, as it becomes praised worldwide, painted as some sort of merciful blessing.

I remember the first time they found deposits of it in my eyes, threatening to make me go blind. I also still remember the first time I complained about pulsating chest pains and was told they came from a type of heartache no one should be worrying about at the age of 17. 

A merciful blessing? We live in constant fear because of this medication. Constantly wondering if it will have yet another side effect, if it will stop working, if we will have to up the dosage… but fearing its disappearance was never on the table. And that is exactly what makes this situation scarier.

Despite all its downsides, Plaquenil is the basic treatment for most lupus and rheumatoid arthritis sufferers, the one that actually seems to lengthen our hopes for life. Other drugs are also used, prednisone, various immunosuppressants, and the infamous Benlysta, but Plaquenil is the preferred one for a reason. Prednisone is a steroidal drug that many cannot take since if used for long it dramatically affects the bones due to osteoporosis and avascular necrosis, not to mention eventual pregnancy complications for women. Immunosuppressants are much akin to chemotherapy, throwing one’s immune system to the ground and below, which is far from ideal in any situation, but especially now that we are faced with a deadly virus. And Benlysta? Benlysta is actually the one treatment that has been developed for Lupus specifically… the one treatment in over 50 years. But it is expensive, 35,000 dollars a year, approximately, and needs to be administered intravenously at a hospital. 

It is either that or we get rid of the idea of “treating” altogether and make do with doping ourselves up with painkillers every single day, as to cope.

We do not have it good usually. We are always in some sort of pain, and although far from ideal it is manageable at least. The same cannot be said during these hard times. Now on top of worrying about our illness, we are also worrying about potentially catching the novel coronavirus, as well as the day-to-day effects COVID-19 has been having on the world. All while not having access to the one drug that can alleviate the main component of those worries.

In places where the sale of hydroxychloroquine is not as controlled, hoarders were quick to scramble to the pharmacies and buy as much as they could, hoping to use it as prophylaxis for the virus, despite evidence that the drug does not help prevent contagion. With this they dug a grave: for us,  for taking our thread to life away, but maybe even one for them, since consuming the drug blindly can bring out nasty side effects that could be fatal. 

Even though the sale here is controlled, I am still at risk of losing my little box of hatred and life itself: the pharmaceutical company that produces it has claimed that shortages will not be a problem. But supplies are quickly depleting, with central stock being taken for further trials and the drug not being replenished in pharmacy shelves. People keep getting turned away by pharmacies, sent on city-wide hunts for a pack. If lucky enough to secure some, and if lucky enough to need low dosage, it might be enough to last a month. But for most people, a box is only good for 10-15 days, meaning that in any case, rationing dosage has become the norm, despite the risk of flare-ups. 

Our mortality increases fourfold if we stop taking the drug for a reason. A lupus flare-up can go from something as mild as a fever and increased fatigue and joint aches to something as serious as multiple organ failure. Every flu season, pneumonia is always a risk for us, now imagine how that translates to the era of COVID-19.

Contrary to president Trump’s claims that we “aren’t catching the virus”, we are the textbook definition of high risk, the people that can easily end up in ICU due to complications. If not because of COVID-19 directly, we will be needing the hospitals due to our own health struggles as our drugs to keep symptoms in check are taken away. And we will certainly be straining the system further, preventing others from getting crucial medical attention during these trying times. A hospitalisation due to a flare-up results in a life and death situation – I have been there myself, in a hospital for over a month due to inflammation in my kidneys escalating to the point of my whole body shutting down. A situation that has thankfully not repeated itself due to the very treatment that is now running low everywhere.

The situation has improved since March. But unfortunately, while the craze over the drug at the consumer’s level has died down… the impact of panic and misinformation coming from the very people we are supposed to trust has left scars. Scars that we shall continue to face the consequences of for months to come. Headlines such as “hydroxychloroquine is not dead yet” contrast with those that claim that the drug shows no effect. Not only do they contrast but they shine brighter – because hope for treatment is difficult to give up on. We would know – the people that to this day struggle to find something that works.

Amidst controversy, our drug remains in the headlines and on some crucial tables, sprinkled all over policy proposals. The crisis is not over. And neither is the hunt for a cure. And for that very reason, any hope at treatment that can help bring a sense of normalcy makes the cut even if not proved, despite the consequences this might have.

Lupus patients all over the world are terrified, but for now, we have no other option but to sit down and take a deep breath while our lungs allow. Hoping that being left untreated or undertreated will not result in our bodies swelling them up, or our weakened systems falling victim to COVID-19 even as cases drop. In the shadows as always, armed only with pillboxes to try and shield our frail and pained bodies, with no governmental body backing us up, nor looking out for us. Forgotten, but still trying to make ourselves known.

Stay up to date on issues of coronavirus and hydroxychloroquine and how they affect people with lupus: 

Edited by Gunvir Paintal

Image from Unsplash!