Discoid lupus erythematosus (DLE) and me, by Maryann

Discoid lupus erythematosus (DLE) and me, by Maryann

It was all a dream, or at least I wish it had been.  I’m Maryann and I was diagnosed with SLE and DLE/Cutaneous Lupus along with other things in June 2018 following 9 years of misdiagnosis.  I was still learning how to recognise and manage flares and was still trialling medications at the start of the Covid-19 pandemic. I’d had to self-isolate quite a few times since my diagnosis due to persistent neutropenia, so I was used to the idea of it when the pandemic forced us into lock down. If I’m honest the DLE and Cutaneous Lupus was at its worse from April to August 2020, so I was happy to stay inside, away from the sun and everyone for a while at least.

I’ve never experienced the Butterfly rash. The lupus lesions can occur all over my body, face and scalp, in my ear (yes inside), even in the most unlikely of places. When a new lesion is developing, I’ll experience a burning sensation, in the area, it will feel hot, become red, swell up and then the skin and colour will erode away.  

I had quite a few discoid patches which would weep and cause my hair to get stuck to open wounds, my hair was falling out.  Because my hair was styled in “sister locs”, I wasn’t just losing single strands of hair but finding actual locs trailing on the ground behind me at bus stops, on the couch as well as the kitchen floor.  The March 2020 lockdown meant that I couldn’t be go to my hairdresser, so I shaved it all off.   And thank God I did.  The inflammation on my scalp got worse and the sores became so bad that they started to bleed. At one point I had to sleep with cling film wrapped around my head I had tried to dress the wound the dressing had become stuck, leading me to pull the dressing off from my scalp creating a bigger wound and more bleeding. 

I had lesions all over my face, the ones around my eye lids meant opening and closing my eyes was extremely painful.  There were lesions on my knees and knuckles so walking and using my hands would at times be excruciating.  By May the lesions has spread all over my body to the point where I couldn’t sleep because no matter which way I lay, I would be pressing on my lesions and I spent 2 months trying to sleep by sitting upright in bed.

My skin issue meant that despite being vulnerable I still had to attend face to face hospital appointments.  But I treated my outings to Guy’s Hospital as if I was going on a date and dressed to impress.  But really, I’m grateful for my appointments as I doubt if I would have received the intervention that I had, if they hadn’t seen the damage the Lupus was doing in the flesh (excuse the pun).  As much as I know that I needed to be seen in hospital I also felt like a circus freak, with Rheumatologists and Dermatologist coming to examine my skin, all looking at me with pity in their eyes, none sure how to ease my pain or make me feel any better.

I am a dark-skinned black woman and after the inflammation calms down, I am usually left with light discolouration, that may or may not get darker over time, and then in some places even darker patches. I didn’t recognise myself and my new face took a lot of getting used to.  People made comments like “it just looks like you have vitiligo” or “you know having patchy skin is common and fashionable nowadays” and while I know they were trying to be positive; it actually had the opposite effect.

My Rheumatologist kept reminding me that stress could be a trigger for my flares and that I needed to destress, which was easier said then done when the year felt like an alternative dimension where I had developed a flesh-eating disease and a killer virus was threatening to make humans extinct (you can tell I watch to many films).  The effect that the pandemic was having on my mental health, I was going stir crazy and with me trying to manage my emotions, keeping the young ones entertained and upbeat and missing the great outdoors (aka trips out), I found it hard to keep my mood up, so I knew this was having an impact of the severity of my flare.  I tried to alleviate my stress by doing the things I loved such as writing poetry (I found that this was great for journaling my feelings and symptoms), doing jigsaws, painting, reading, I used my Instagram page @3heartsbeatingpurple as an outlet, watched box sets, sung and danced around the house, and made my front room Jumanji worthy with plants.  

I was prescribed a mixture of topical lotions, creams (e.g Dermovate), and pain killers to ease the spread of the lesions and stop them from becoming infected.  I was started on Belimumab infusions in May 2020 which helped ease the main symptoms of my SLE, by the end of the year I was on a prescription that included Methotrexate, that has not only improved the occurrence of the lesions but has also healed my scars, brought colour back in some places and allowed to recognise myself in the mirror again.

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