Taboos around lupus in the South Asian community By Vanisha Patel

Taboos around lupus in the South Asian community By Vanisha Patel

My name is Vanisha Patel, I am a 30 year old optometrist living in London, diagnosed with SLE 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 had 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 of 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, as we were still waiting for an NHS referral. I remember telling the consultant “I think I have behchets” after using Google to try to work out what was going on. He carried out a thorough history and asked me to do specific blood tests and told me he was 90% sure I had something called lupus. My test results confirmed his diagnosis and from then I was under the care of Bart’s Mile End Hospital rheumatology team.

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 being told by their loved ones to keep their health a secret, especially in the south Asian community as parents fear their future, especially for girls. I have been blessed with an extremely supportive family who have never asked me to hide my condition.

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 Instagram awareness page as I want people to know they are not alone and 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 some people with lupus).

Lupus doesn’t only affect an individual but everyone around them. I have seen my parents break down, my sisters and friends have a hard time coming to terms with my limitations. It is mentally draining for everyone involved. 

Relationships are difficult generally, I remember this sinking feeling the first time I was rejected or ghosted due to my illness, I think that was a turning point in my life where I actually realised how much this impacts my life, in ways I hadn’t even thought. I remember my dad (as all Asian parents like to do) say what’s happening with your dating life? I broke down and said dad, I’ve been rejected/ blocked based on lupus. I’ll always remember that conversation, he sat me down and told me some harsh realities and mindsets that are around and how I could potentially be perceived. I guess I just didn’t want to believe it but the truth is people do see it as a major disadvantage and the shocking thing is it’s not just the older generation, it’s young people too.

The reality is nobody will fully understand the daily struggles and frustrations but we can only try our best to educate those around us so that maybe one less person will feel alone.

Over the years I’ve realised even the closest people struggle to understand and that’s okay, it’s hard from their point of view to see someone they love and care about feel helpless but it’s a journey we are all in together.

I have huge anxieties about my future, constant fears, and 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.

October is Lupus Awareness Month, I am working with LUPUS UK to help raise awareness, especially in the South Asian community.

I journal my journey – both good and bad days to help show what lupus can look like “behind the scenes” and hope to create a small community where people can feel comfortable sharing their experiences or simply learn a little more about lupus.

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