My name is Vanisha, I am a 30 year old optometrist living in London diagnosed with SLE lupus in 2018. Never in my wildest dreams did I think at 25 I would be on lifetime medication and taking daily pills to survive. I had no idea what lupus was apart from the little I learnt about it in a lecture at university.
When I started developing my symptoms which were Raynaud’s, mouth ulcers, joint stiffness and headaches I thought I was just recovering from an episode of meningitis which I had contracted not too long before. Months passed by, my symptoms were getting worse and I was going back and forth from A&E with no answers. It was a scary experience, I had no control over my body and no idea how the next day would be. It got to a point where I stopped attending clinics at university as some days I wasn’t able to stand or the pain was just too much.
I went back home for Easter break in 2018, my parents took one look at me and panicked with the sheer weight loss and general state I was in. No amount of FaceTimes actually give a clear picture to how much your health has deteriorated and I was underplaying my symptoms a lot as I didn’t want to stress out my parents who were miles away. My dad got me an appointment with a rheumatologist at London Bridge hospital privately, at this point we were still waiting for a NHS referral. My test results confirmed a lupus diagnosis.
I was diagnosed almost 5 years ago but I am coming to terms with my illness now. I had no idea how the limitations will impact me both physically and mentally and have been at my lowest these last 8 months. As lupus is an “invisible disease” I have not only had to deal with my own personal battles but dealing with employers, friends and family who feel I look healthy enough and brush it off like the common cold. It wasn’t until I started collapsing and being under multiple consultants that those around me started to understand the severity of the condition.
5 years later and I am still learning about my condition so I don’t expect everyone to know everything, but there is clear room for awareness and education on lupus.
One of the most heartbreaking things Is hearing fellow warriors with lupus or autoimmune/chronic conditions be told by their loved ones to keep their health a secret, especially in the south Asian community as parents fear for their future, especially girls. Fears such as marriage (who will marry you?), pregnancy (can she have a child?), ‘ideal daughter in laws (will she be perceived as lazy, or too sick?)’ are put first rather than the suffering due to the fears of society.
I started my IG awareness page (monzo_vs_lupus) as I want people to know, they are not alone, to raise awareness especially in the south Asian community. We did not ask to be sick, but we do everything we can in our power to get through a day. Some days are more difficult than others and we also have good periods, but things can change so quickly, within hours for lupus suffers. Lupus doesn’t only affect an individual but everyone around them, I have seen my parents break down and my sisters and friends have a hard time coming to terms with my limitations. It is mentally draining for everyone involved.
I have huge anxieties about my future, constant fears, questions running through my mind daily, “ will I have to change career?” “Will I be able to be a mum?” “will I find the strength to make it a little longer?”.
I don’t know the answer to these, so all I can do is take it one moment at a time. A few kind words of understanding can go a long way. I’ve had comments like “at least it’s not cancer” or “there’s people worse off than you” whilst these are true, it takes away from the struggles. I started thinking I shouldn’t be feeling down, I should keep a positive face. This affected my mental health more.
Over the years I’ve realised even the closest people struggle to understand and that’s okay, I am hoping to share my story to raise awareness and share the realities of living with an autoimmune condition. I have had MANY ups and DOWNS in the last 5 years and still surprised at what new things my body presents with.
Some days lupus wins but some days I do. There are days I’m FULL of energy and days where I can barely stand. I want to be able to confidently share these realities so even if it helps one individual know they are not alone - I’d count that as a win.
January 2023
