The Invisible War: My Battle With Lupus
August 2004, I was in my early 20’s and my daughter had celebrated her first birthday in July. In the early hours one morning I got the news that my grandfather had passed away. The sense of loss was instantaneous.
The days that followed were filled with tears but also joy as we shared fond memories of him. My grandparents lived in the Caribbean so the funeral would take place there.
The family busied itself with the preparations. My mother and uncles would fly as soon as they could.
Sleep eluded me like a game of hide and seek and I grew more and more exhausted with each game I lost. One night I lay in bed, restless and uncomfortable. The pain in my back had intensified over the course of the week and my chest felt tight.
A UTI was my initial thought; I was no stranger to them so I decided to get some water. As I tried to sit up I was gripped by a sharp chest pain that literally took my breath away. Gravity sat heavy on me and with each breath it got heavier. I prop myself up with my pillows, this offers little to no relief. Moving equals pain, breathing equals pain. I try to stay as still as possible and breathe as shallow as I can.
By morning I'd had my fill. I was going to the hospital. I took a taxi to my nearest A&E.
A couple of hours later I was being seen by a young doctor. Our interaction felt strained from the outset. Both of us were clearly tired and impatient for a resolution. The pain had ramped up and breathing whilst talking was nigh on impossible. After a very general line of questioning he proceeded to examine me. I winced with every touch and his annoyance grew.
“Deep breath in”, he said.
I looked at him with disbelief. It seemed this was the final straw for the both of us. He asked if I had taken anything for the pain. I told him I had taken paracetamol the night before.
“Ok, well it sounds like you've just pulled a muscle, but I'm just going to speak to a colleague. I'll be back”. With that he left the room.
I sat there feeling embarrassed. A pulled muscle? Draining NHS resources on a pulled muscle. But what if it was something else? What if this overworked, underpaid, Doogie Howser looking doctor got it wrong?
After all, I had done nothing to warrant such an injury, no working out, no heavy lifting, nothing. Although plausible, it didn't feel like a ‘pulled muscle’ and what of my back pain?
He returned to the room.
“So we’re just gonna go ahead and give you some stronger pain relief, and see if that helps”.
I had no tests, scans, not even basic observations. The pain, the light headedness, the exhaustion, it was too much. I called a taxi and left. I arrived home and got straight into bed.
I hear chatter around me. The voices are unfamiliar and there's a sense of urgency in their tone. They're saying my name. I'm aware of a mask on my face. I open my eyes and try to get a sense of what's happening. I recognise the ceiling, I'm at home in my bed. I lock eyes with a woman who seems relieved to see me, she is a paramedic. I can see my partner speaking with another one. I was unaware that several hours had passed and my condition had worsened.
I try to speak but the heaviness I felt before is now crushing me, I try to move but I can't, I've lost feeling on my right side. The voices fade out. They move me into the ambulance, I hear the voices again, a familiar one this time. My mother arrived just before we were about to leave. She was flying out the next day for the funeral.
I lay there wondering if we’d see each other again or would she come back from burying her father to bury her daughter. The voices fade out once again.
The next few weeks read like a who’s who of the Hospitals elite. Doctors, Consultants, Trainees from various departments trying to stabilise my condition. It turns out my chest pain was caused by a Pulmonary Embolism in my right lung, that's a blood clot to you and I. My back pain was due to Acute Nephritis- an inflammation of the kidneys and there was nothing cute about it. Lastly the loss of feeling down my right side was due to a Mini Stroke.
So no, definitely not a ‘pulled muscle’.
The treatment was relentless and aggressive. Scan after scan, test after test, my body was pumped with drugs all throughout the day. After a few more weeks, I started to improve.
My doctors were happy but not enough to let me go home. The question remained, how does a relatively healthy young girl end up presenting with all of these potentially life threatening symptoms at the same time?
The days rolled into weeks and weeks into months. I missed my daughter, my family, my home. I had several failed attempts at discharging myself while my doctors continued to play connect the dots. Until finally they had a tentative diagnosis.
Systemic Lupus Erythematosus (S.L.E). You’d be right in thinking that it was something I had never heard of and I was sure like before, they had got it wrong.
But what is it? Lupus is an incurable Autoimmune Disease. We all know how great our immune systems are at attacking things that can make us unwell. It's our first line of defence. But if you have Lupus, your immune system attacks your own healthy cells and tissues instead of any bad bacteria or viruses. This causes damage to many parts of your body, including the joints, skin, kidneys, heart, lungs, blood vessels and brain.
For doctors in the know it is also referred to as The Great Imitator, this is because it can look like so many other diseases. In addition, symptoms of Lupus can come and go and new ones can appear at any time. So a diagnosis can take months, or even years, due to the variability of symptoms over time, this makes Lupus harder to identify. As if things weren't complicated enough, there are different kinds of Lupus too. Since there is no one test, doctors rely on a number of assessments, medical history being a major one but also more specific blood tests and scans.
It appeared the doctors were running with the Lupus thing. My Medical team was now bigger than ever. The Clinical team kept my blood thin and flowing, the Physios helped with my mobility, The Renal team kept my kidneys from failing and sized me up for a Biopsy, whilst Rheumatology had the in-enviable task of controlling the inflammation. I had more tests, more scans, more drugs and more blood being siphoned from my body.
I was somewhat of a celebrity around the ward now, I was the youngest patient by at least 30 years. My escape attempts were becoming more elaborate, much to the dismay of my family and this probably added to my notoriety. I knew the phlebotomists by name and the nurses loved when my daughter would visit, plus I had a tv. I was able to walk unaided and fairly steady on my feet so I was allowed to go to the showers alone. On my way back I would sit with Gene. She rarely had any visitors. Days drag in hospital, I counted down the hours until a visit from my family so having that time with Gene would hold me until then.
The nurses thought our unlikely friendship was odd but sweet. Little did they know we mainly gossiped about them.
On my way to the showers one morning I noticed Gene’s bed was empty, probably gone for a scan I thought. I asked at the nurses station.
“Where's Gene”? “Oh I don't know, just started my shift”, she replied.
I carried on to the showers. On the way back the auxiliaries were changing Gene’s bed.
I went into my room and put my toiletries away. Shortly after the same nurse came in. Her face spoke before her lips moved. I knew. Gene had passed away in the early hours of the morning. My heart sank.
By now my doctors were fairly certain I had Lupus, but what made them so certain? What was it about me? Up until this point I had been fine.
Lupus predominantly affects women and is more common in women from Black or Asian ethnicities. Right ok well I’m both of those things, what else?
The main triggers for Lupus are puberty, childbirth, and menopause and usually occurs between the ages of 15-55. Other triggers include viral infections, strong medications, sunlight and trauma.
So basically life is what you’re saying, Lupus is triggered by life!!
Apart from the menopause I have experienced or been exposed to all of those things.
I had to resign myself to the fact that I had this ridiculous disease and if it remained as active as it was, my prognosis was not good. So I needed to know what I was in for.
No two Lupus journeys are the same. It affects us all differently and the symptoms vary in severity. So what are the symptoms? Well there are many but the most common include: joint pain or swelling, muscle pain, fever when you’re not sick. Various skin rashes, one of the more common of which is a red rash (called a butterfly rash) usually on the face and cheeks. Chest pain when taking a deep breath. Hair loss, pale or purple fingers or toes. Sensitivity to the sun. Swelling in the legs or around the eyes. Mouth sores. Swollen glands. Fatigue. I was clearly spoilt for choice.
The invisible war inside me was raging. My immune system took no prisoners. The biopsy revealed damage to my right kidney. My right lung also showed damage and scarring.
At least we now knew who the enemy was. The battle plan was clear we needed to slow down the effects of the disease, which meant taking out my immune system.
Over the next few weeks a combination of Immunosuppressants, high dose steroids and a disease-modifying antirheumatic drug (DMARD) were called to action. It was a valiant effort.
They provided enough cover fire to get me out of immediate danger, but still the war raged on. It was clear we were not going to win and I couldn't stay in the hospital forever.
My worst fears were realised, there was nothing more to be done. I was looking at a couple more years if I had no more major ‘events’. The damage would continue and eventually compromise my organs.
Imagine being told to ‘get your affairs in order’ at the tender age of 23. All due to a disease you hadn't even heard of 3 months prior. If it hadn't happened to me I would have found it incomprehensible. I was to continue being treated as an outpatient with strict conditions.
But all I heard was I can finally go home.
My family rallied around me. I knew they were struggling with the news, especially my parents. We tried to get back to a sense of normality. My new normal became hospital appointments each week sometimes twice. So many pills there was no room for food and trying to inject myself without leaving a bruise.
Two years on and I was still battling this disease. With every month after that, we all felt like I was cheating death. Every so often I would be reminded that cheaters never prosper. Nothing like a hospital stay to curb my enthusiasm. The Lupus would throw every symptom I mentioned in my way so it turns out I didn't have to choose.
By 2015 I had Lupus sussed. It would continue to let me live as long as I felt like crap while doing it. I would still have flare-ups and end up in hospital and damage was still being done. This would be my existence until it decided otherwise.
My lungs were getting worse and bouts of Pleurisy were a monthly occurrence.
Pleurisy is when the thin lining between your lungs and ribs becomes inflamed.
A scan showed a Pleural Effusion. A Pleural Effusion is excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs. This excess fluid can impair breathing by limiting the expansion of the lungs. Chemotherapy was added to my already long list of meds.
My consultant was unusually chipper on this occasion. Maybe it's because she had a visitor in with the room. She introduced me to the doctor who was a Research Fellow in Rheumatology. Our appointment starts in the usual way. I give her a run down of how I've been. She knew I'd been admitted recently and seen my scan results. In between talking to me she would turn to the other doctor, giving her snippets of my medical history. She had been my consultant since I was admitted in 2004 and knew it inside out.
She told me she had some news about a clinical research study that was happening in the next few weeks and wanted me to do it. There was a screening process but she assured me I fit the profile. It was a single injection, I can handle that. This could be life changing, not just for me but the millions of other Lupus patients out there. I agreed. The first couple of months went without incident. I felt no better but felt no worse. By week 10 I started to notice a change. My joints don't hurt as much. I revelled in my new found freedom. Around week 17 the pain returned and so did the Pleurisy. I was back in the hospital. It was a disappointing blow, but I wanted to continue. I seemed to be deteriorating and there was talk of taking me off the drug. But I persisted. I had been on the drug for 6 months when I got Pneumonia. My white blood cell count was dangerously low, they removed me from the study.
I reverted back to my usual way of life for the next couple of years.
It's now 2020 and I have lived 13 years longer than they originally thought.
Ever the optimist my consultant refers me to the Lupus Clinic at Guy's & St Thomas.
It was the same year my partner at the time told me about a doctor in America with Lupus who had reversed the condition and practically cured herself. How? By changing her diet.
My constant battle had turned me into a cynic, this had to be a scam. She probably didn't have Lupus as bad as I did. But I promised to keep an open mind. The premise was simple, ‘...you are feeding your body the very best foods to nourish your cells and allow them to do the work they need to do to decrease inflammation and heal’. These foods were plant based.
I read her books and watched her videos online. It was insane how similar our Lupus journeys were. Could this really work for me? I had nothing to lose, I was doing it.
Now I definitely did not go into this lightly. I was a true carnivore, the meatier the better.
Oh and cheese I was obsessed with cheese, specifically cheese toasties. Was I ready to give them up? I slowly removed meat and dairy from my diet. I watched ‘What The Health’ and ‘Cowspiracy’ on Netflix and they both solidified that decision. By January of 2018 I was Vegan. I flooded my body with superfoods and anti-inflammatory foods like Chia seeds and Tumeric. I drank super green smoothies and ate healthier nutrient dense meals.
The first thing I noticed were my energy levels. I wasn't feeling so lethargic anymore. Next my joint pain and swelling had disappeared. With no pain I could stop the pain meds, with no inflammation I can reduce the steroids. I could slowly come off all my meds. Each month that passed I felt better and better. In three months I had lost 2 stone. Was I reversing my Lupus?
By May I had completely come off all of my medications and I felt amazing. I had an appointment coming up and I was desperate for my consultant to tell me I was in remission.
It was 6 months since we had last seen each other. I sat there grinning as she looked at papers in front of her. When she finally looked up, she realised it was me. I told her about my change in lifestyle and how great I felt. She was in disbelief. She fired questions at me. I could see although she was happy for me, my track record was awful. She worried that because I had come off ALL my meds, I may have left myself self vulnerable. I needed a full set of bloods done.
In the 16 years of being diagnosed with Lupus, not one medical professional has ever spoken to me about my eating habits, nutrition or things I may be eating that contribute to my disease, like meat and dairy.
In the 16 years of being diagnosed with Lupus, not one medical professional has ever spoken about finding a cure for Lupus.
During the clinical research study I decided to do a basic immunology course. It made sense that since I had an autoimmune disease I should know about my immune system and how jacked up it was. Every week I would share what I had learnt with Dr X and she would explain anything I wasn't too sure on. I decided I would ask her about a cure for Lupus.
I was emboldened by my recent topic covering the Thymus and Spleen. I over simplified, but I was sure one of those organs wasn't doing its job. She admired my passion but said it was a truly complicated process and we still do not know enough about the immune system. I pressed her again, I could sense there was something else. We are only looking at how to effectively treat patients' symptoms. But why? Frankly put there is no money in finding cures.
For the people in the back, THERE IS NO MONEY IN FINDING CURES.
For those still reading, I have been in remission for 2 years and 4 months. I got Covid and survived and yes I'm still Vegan. I don't know how long Lupus will allow me to continue cheating, but for now there is peace.
October is Lupus Awareness Month, so if like me you had never heard of it please help by spreading the word.
I dedicate this to all the Lupus Warriors fighting The Invisible War.
Written by Natasha Pierre-Louis
My name is Natasha. I live in East London with my amazing 17-year-old daughter, who simultaneously manages to keep me young and age me. I work for Levi Strauss as the Training & Admin Manager. I am also the founder of WMNKIND™ a community for Women and Young Girls and co-host of the brand-new podcast "Punching the Wall". I have always written but have never considered myself as a writer. But maybe, just maybe my English teachers were right…