Aarti D. - Diagnosed at age 14

Hi, I was first diagnosed with lupus in my teenage years in 2000. I got a very bad butterfly rash. I had other symptoms also like frequent mouth ulcers, fever, weakness, pain in legs and Raynaud’s. But during that doctor was still doubtful, because in blood tests and other reports ANA & DS DNA were negative. So, he recommended applying sunscreen, and avoid getting injured. He gave me sunscreen and a few skin ointments.

The worst part was Raynaud’s because my place used to be very cold and during winter exams I started facing writing exams. I lost my confidence and started gaining weight because I restricted sports and going out. But me and my parents were not very aware about SLE and didn't understand quite well until my second semester for engineering in 2003. My period didn't stop for 3 weeks; it was very heavy with thick clots, along with thymbrocitna rashes on my legs and hands. My platets dropped to 25000. I was admitted in ICU and given external platelets. Then DS DNA become positive, and lupus was confirmed. I was put on steroids and multivitamins.

The story didn't end here. I faced flares 5 times, once lost hair completely, had my kidney impacted, and again had bad rashes and swollen face.

It was in my late 20s that I realized I need to take extra care for myself. I started paying attention to my lifestyle, started exercising, regular doctors follow ups, and healthy diet, but life never goes as smooth no matter how hard you try. After marriage, I faced excessive stress. Managing expectations of extending family took a toll on my health. But my doctor helped and I guess support from workplace helped me lot. Becoming a mother is a dream for most married women but for lupus patient it is a very big risk.

Though it was very stressful, and with my doctors playing a big role, I gave birth to healthy boy in 2017. But again in 2021, managing my career, toddler and covid stress put me in insomnia and depression. I contacted a neurologist and psychologist when I didn't get sleep for 3 consecutive days. Weight gain during covid was an added stress trigger. Timely treatment helped me. I stopped neurologist follow ups in 2023.

My 22 years of experience with lupus taught me following things:

1) Maintain a healthy lifestyle. You don't need to have a special diet until any major organ is involved . Eat green vegetarian diet.
2) Exercise daily. It is myth that exercise will increase pain. Instead, exercise helps to build strength and stamina. I do yoga for my mental health and train my mind. I do weight training for building strength. I do cardio for increasing my stamina.
3) Healthy weight helps to keep steroids and other medications dosages low.
4) Body and hair oil massage helps in keeping joints and hair healthy.
5) NEVER SKIP MEDICINE. Regular doctors follow up is must even if you are healthy.
6) 3 months eyes, dental and body scan is must to rule out any organ involvement.
7) Stress management is a must. In my case, my flare ups were always triggered because of stress.
8) Work and become financial independent. It brings happiness and confidence. It was my work that always encouraged me to live.
9) Be vocal, be it at home or at work. Open and honest if you are not feeling well. Say loudly if you need a break.
10) It is your precious life, you have to take an effort to cherish it.

Last but not least, I would say - lupus is a blessing in disguise, encouraging us to live a healthy and stress free life.