My Lupus Story

4 glass walls of entrapment, distinct sterile scent, floating masks everywhere... cold as ice I continue to tremble uncontrollably in this intensive care unit.

“Please give me an extra blanket I am freezing.” – I plead.

At this point I am highly annoyed; the nurse looks at me with a neutral glare and further instructs.

“I can’t do that mam your temperature is way too high you could get hyperthermia at this moment I am trying to lower your fever!”

In despair I start having an inner dialogue with myself, how on earth did I land up here????

Maybe had I visited the doctor much earlier when these symptoms had started emerging and were more manageable...??

What started off as a simple cold quickly escalated to take a form that was highly destructive- let me just add that I had lost complete ability to physically get out of bed on my own...

Why was that not an enough excuse for me to submit my sick leave at work- I continued to contemplate...

Initially I was convinced I had COVID but after 3 negative COVID tests later my doctor’s focused gaze at my results still looking puzzled wasn’t reassuring. He starts scanning and flicking hurriedly at my medical record file with a sigh he announces- “This looks like COVID I am convinced, matter fact when I had COVID previously it took 3 tests before I tested positive”- Lets do the 4th COVID test” and swiftly he leaves the room to attend the next patient. ?

At this point I could not hold back the tears after being pricked and prodded by multiple nurses throughout my entire stay, I was disappointed in myself for failing to advocate for myself- I should had said no. Matter fact I should have asked for another doctor! I don’t have COVID and yet I am expected to foot the bill for these stupid COVID tests...

This was too much to take, no family visits and poor phone signal I had little to no communication with my loved ones. When the lab ladies finally came into my room to take more blood samples and the 4th COVID test I could not control myself I had been traumatised by that long earbud being uncomfortably inserted inside my nose.

What started with a soft whimper quickly escalated to the ugliest cry you could ever imagine, type of a painful wale which pierced through the ears of everyone in that ICU, all the nurses rushed to my bed to calm down me eventually- in one deep breath I was able to take my final swab…

“What is wrong with me?”??

Is the question I would ask anyone who would enter my room- what was my body trying to tell me?

“It’s bronchopneumonia”- the doctor says as he signs my sick note.

“How long do you want to stay out of work?” at least a week chile- I replied.

My health did not get any better matter fact only two days after being discharged I was back in the emergency room my symptoms had started to creep in, especially the shortness of breath. After back-to-back hospital day visits, I finally got admitted again.

Finally, a rheumatologist came through my hospital ward- the 3 words that would change my life forever- “You have Lupus”.

This month is Lupus Awareness Month and today is World Lupus Day I wanted to use my article to educate you on what Lupus is all about with the following 10 facts, this is the type of information I wish I had direct access to when I was still learning more about my diagnosis:

1?? Lupus is an autoimmune condition what this means is that your immune system which normally protects you against infection and illness instead mistaken your healthy organs and tissues as foreign??.

2?? Lupus is a chronic disease this means that anyone who develops Lupus will have Lupus for the rest of his or her life.

4?? Lupus is not contagious. You cannot "catch" lupus from someone or "give" lupus to someone.

5?? There are many different types of Lupus which come with its various symptoms because of that Lupus affects each person differently.

?Cutaneous/ Discoid Lupus- Lupus which affects the skin – Seal the musician as well as Michael Jackson had been rumoured to suffer from this type of Lupus hence Seal’s infamous facial scars and Michael Jackson glove wearing and hyperpigmentation of the skin Vitiligo which is common amongst people with auto immune disease.

?Lupus Nephritis – Which affects the kidney- Pop music sensation Selena Gomez and Nick Cannon both suffer from this type of Lupus

?Systemic Lupus Erythematosus – This type of Lupus affects all the tissues and organs in your body- heart, lungs, brain etc- This is the type of Lupus Tony Braxton has.

5?? People with lupus are more vulnerable to infection due to their medication that they take- which is why pre-covid times a lot of Lupus patients practised social distancing?? as a form of self-protection because of their highly suppressed immune system.

6?? Lupus is highly unpredictable, one day you have a good day, the next day you can’t get out of bed it’s a disease of flare ups which does not come as a surprise why Lupus warriors experience heighted anxiety and depression.

7?? Anyone can develop lupus, but certain people are at higher risk for lupus, mostly women between the ages of 15 to 44 of certain racial or ethnic group especially of African, Asian, and Hispanic descent.

8?? Lupus mimics other diseases which are why it can take several years for someone to be diagnosed with Lupus- I was lucky enough that I got diagnosed after only 3 months the average Lupus diagnosis takes 6 years.

9?? Here is a fun fact the word ‘lupus’ (Latin for ‘wolf’)?? is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.

1??0?? Also, the wolf also represents the strength, power, and presence, just as wolves run in packs so do, we Lupus Warriors support each other as we live this life together- which is why you will often hear some Lupus patients address themselves Lupus warriors????.

It was a relief to find out what was happening to me even though it didn’t make the process any easier- the trauma of the Google search engine left me no choice but to request a psychologist to visit me in the ward to deal with harshness of this new reality.

She reached out to me with a warm hug she could see my pain and confusion, she was empathetic, caring and so knowledgeable about the disease for the first time in a long while I felt like I had an ally in this hospital.

This year will mark 4 years since my diagnosis and now in a much better state mentally to deal with the disease- Lupus doesn’t define me but is a part of my life I had to come to terms with it and readjust my life to not just survive but to try to thrive in this new body??.

Lupus is an invisible disease, symptoms are not immediately visible to others, it is often considered an invisible illness. This invisibility can reduce the social support received from family and friends on the outside I may look okay but on the inside my body is at war with itself.

Which is why I thought I would share my story to bring more awareness to the disease and the day to day struggles we as Lupus warriors deal with, especially if you have a family member, a friend or even a colleague who is currently diagnosed with Lupus you too can emphasize with the day to day struggles.

For the rest of the month I will be sharing interesting facts about Lupus to spread more the awareness across my network. As today is considered World Lupus Day?? would appreciate it if you too can share this post so we can spread the Awareness of this disease #lupuswarrior

Olwethu M- " I am in the business of transforming ambitious professionals into thriving professionals."