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Submitted by Priya Bhargava on 22 January 2020
A woman in black and pink on a wheelchair in an outdoor setting

Priya Bhargava was affected by Lupus as a teenager and had multiple disabilities. Yet she fought bravely and pushed forward to pursue all her dreams. Read how she empowered and transformed her life.

She has boldly sidestepped Lupus, a chronic autoimmune condition that can cause inflammation throughout the body. Despite early onset of symptoms and multiple disabilities, she continued to dream big and break barriers. Her disease has never been her identity. She is multi-talented and known for her many successes and triumphs.

Achievements

  • She represented India in the Miss Wheelchair World beauty pageant held at Warsaw, Poland in 2017. Now she is the ambassador of Miss Wheelchair World in India.
  • She is a petitioner to make “Cinemas Wheelchair Accessible” and “My Yellow Vehicle” for school students’ safety. She is exploring opportunities in various fields so that people on wheelchair find new avenues to sustain their lives.
  • She has not only exhibited and successfully sold her art and crafts but also worked for a dress designer whose work was exhibited in Delhi and Dubai.
  • She is a qualified a software engineer (Regional Centre Topper in BCA and MCA) and now a budding psychologist. 
  • She has been awarded the ‘Nari Pratibha Puruskar’ from government of India MSME in association with WEA (Women Entrepreneurs Association of India).

Interview with Priya Bhargava

Please could you tell us a bit about your condition?

I have Lupus with Transverse Myelitis (an inflammation of the spinal cord). TM was induced due to Lupus. I had poor bowel and bladder control and also difficulty in balancing and independent walking. With good care and management, my Lupus is under control. It is not active at present. There is no fever or rashes.

What were your early symptoms? What made you see a doctor?

I was diagnosed with Lupus when I was 19 years old and was in the first year of graduation. The early symptoms manifested themselves as severe sunburn and extra sensitivity to sun and cold weather. I used to have skin sores over my ear lobes, the tips of my finger, nose and toes. I had to visit a dermatologist for it. The doctor declared that I had DLE (discoid lupus erythematous) which just involves the skin. It then progressed to SLE (systemic lupus erythematosus) where the early symptoms were high grade fever of 104-106, joint pain in fingers and visible butterfly rash over the face which included both cheeks and nose.

How do you prevent a lupus flare-up?

To prevent lupus flare-up I take care that I don't exert myself much physically and mentally. I try to avoid stress. I take proper rest and have a balanced diet. I try to be physically active. I take my medicines on time without forgetting. I go for reviews whenever my doctor advises. I go for tests every 6 months which is compulsory.

Have you made modifications in your diet?

I avoid eating junk food. I try to eat nutritious food as much as possible. Gluten free diet does help though I am not regular with it.

What kind of specialists do you consult and how often?

Immunologist is the main specialist who supervises the Lupus case. Rheumatologist is another specialist who can supervise. Since lupus can involve any of the vital organs I have to visit the doctor according to the ailment I am suffering from. For example - dermatologist for the skin, cardiologist for the heart, nephrologist for the kidney, neurologist for the spine and brain etc.

What changes have you made in your lifestyle because of Lupus? How do you cope mentally and emotionally?

I have learnt to respect life. I have stopped taking myself for granted. I do take care of my comfort a lot. If I don't feel like doing anything, I relax. I try to spend time on things that I love like my hobbies, painting, creative activities, writing, etc. I avoid going to unhygienic places and public toilets since immunosuppressive drugs are given and this leads to poor immune system. I disconnect with people who do not understand my condition and are not empathetic. It is very important for our emotional health. We need to accept ourselves and our condition and love ourselves unconditionally.

Who has been the biggest support/companion through it all?

I am blessed to have lovely parents who pamper me a lot. They understand me more than me. They have been a biggest support to me.

What were some of the challenges you faced and what is your advice to patients facing similar situations?

Lupus in any form is a challenge. Lupus challenged me the most when it affected my mental health and then spine. I was bed ridden for 18 months and undergone several sugeries within 4 to5 months. I had to discontinue 2 professional couses due to this. Though, now, I am a software engineer and a psychologist. I did manage to get a professional degree at last.

I would like to tell others who are in a similar condition that they should never lose hope. Keep dreaming and continue no matter how many times you fail. Your live and determination for yourself would certainly work. It has worked for me. I promise.

What is your present condition?

I have a now started walking with a bit of support. I had to put in a lot of effort for it. My disease is under control, though ups and downs are part of the lupus so I have learnt to handle it.

 

Priya Bhargava is a freelance writer. She has worked with web portals like Popularium, thecompletewomen.in, Inclov and writing for the people in Quora. She is a co-author of the book “Holding My Tears”. Her book ‘Stories from My Life’ is under the process of publication. She is the brand ambassador of FOGSI - Save Girl Child and Women Empowerment.

Her life stories continue to be telecasted/published from time to time in several magazines and platforms. 

She is also a motivational speaker. She has her You Tube Channel named “Kuch Baatein/ By Priya Bhargava” for educating “life skills” to the people.

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