Shreya Shukla, 26 years, runs her own Digital Marketing Agency, based in Kanpur, UP and lives with a diagnosis of Juvenile Lupus. She shares her experience of the complexities of Lupus at such a young age, from delayed and wrong diagnosis to managing the condition and her journey to independence.
Symptoms and Diagnosis
In November 2008, when I was 12, I had body ache, joint pain and mild fever and when I consulted my doctor, I was treated first for Chikungunya. Prior to this in 2007, I had had an inflamed and infected lymph node and had to go through lymph node removal surgery in a private hospital. I was also treated for TB for 9 months, after a mild positive result when tested.
Later in 2009 i started having few symptoms I had high fever where my body did not even feel warm, slowly gradually as days and months passed these symptoms combined with full body pain and photo sensitivity, I developed severe joint pain, couldn’t even stand, my fingers started getting misshaped. I also had swollen lymph nodes with severe weight loss and was again treated for TB for another 9 months in 2010 because my doctor thought I haven’t taken medicines previously properly that’s why my disease got activated. The symptoms actually worsened after this and I had fever twice a day instead of once a day. Between 2009-2012, I have tried every kind of treatment but homeopathy did not suit me and Ayurveda has a lot of scam of mixing pain killers with ayurvedic medicine and claims of magic cure.
Later in 2010 one of my doctor referred me to SGPGI Lucknow, I visited SGPGI (Sanjay Gandhi) hospital and consulted a Hematologist and considering my symptoms they thought it was Lymphoma and where the tests were not indicating any sign of Lymphoma, yet they did multiple biopsies and bone marrow biopsies. After which I also visited Cancer centre in Delhi and tests there ruled out Lymphoma.
In 2012, based on a father’s friend’s suggestion, I consulted a Rheumatologist at KGMC and after being admitted for a month and multiple tests was finally diagnosed with SLE in December 2012. All tests like Antinuclear Antibodies (ANA), Elisa were done. Finally I got the right doctor for Lupus & treatment was recommended who asked me all relevant questions for diagnosis and took a detailed history.
Since then after the right treatment was started, things are much better. I just get mild to severe headaches and minor joint pain, fatigue and seasonal swelling in joints. In winters I do feel some pain in leg and shoulders. I take proper measures to not give my body any shock with a change in weather conditions.
Initially my liver and spleen were swollen and this was treated, but thankfully Lupus has not affected any of my other organs.
Treatment
After the diagnosis of SLE, in the initial 3 months they prescribed me Steroids – Methotrexate 20mg which was then reduced with time. After 4 months, the steroid medication was stopped and other medicines were started – Hydroxychloroquine – HCQS (everyday), Methotrexate (few days a week), Vitamin supplement B9 – Folic acid (few days a week), Thyroxine, Calcium, Naproxen (regular pain killer) and Iron supplements, Multivitamins. Currently taking 4-5 medicines - HCQS (5 days a week), Methotrexate (once a week), Vitamin supplement B9 – Folic acid (twice a week), Thyroxine, Calcium, Iron, as prescribed. In these many years I have practiced to bear the pain. I have worked on my body so I don’t need painkiller now. It’s been years. Only in winters somedays I have to take painkillers.
Side effects of the medication resulted in colour pigmentation of the skin and face. Initially for 2 years there was not much of side effects, but now I have headache, skin heating and itching in summers, extreme photo-sensitivity, joint pains at times. Doctor said I do not have brain fog, though I can’t remember a lot of things so I have to keep notes I feel like having episodes of brain fog few times of my hectic work days and that irritates me sometimes although I am working towards it by doing meditation, this is helping me. I do not take any other forms of treatment or medication.
Social and Medical support
When I was diagnosed, people in my immediate surroundings understood but others including teachers as they thought I looked fine, and I was lying when I stay lazy in the classroom but later when my parents explained to them and I shared they understood. I couldn’t explain my condition to them.
My friends have been supportive and try and encourage me to forget about my illness. My doctor always advises and motivates me not to think that something is wrong with me.
I was curious and asked my doctor a lot of questions and now after 4-5 years of consultations, I feel that he responds well to my queries.
For information on Lupus and more details on my condition, I had to resort to Social media and search through Youtube/Quora and Instagram. Created an Instagram page @Lupushuman to connect with other people who have a similar condition, so I can talk to them and understand their condition and share experiences because I wanted to know more about this.
And then I connected with Shambhavi via Instagram, who introduced me to the Lupus Trust India Founder and included me in the group and connected for the last 1.5 years. It feels good connecting with the people associated with Lupus Trust India, as they are a very cheerful community and are focused on building awareness.
Emotional and Psychological impact
With so many tests, so many hospital visits and different medications for TB and other conditions that were tried on me for over 4 years (2009-2012), I felt like a lab rat, with no improvement in my condition.
I feel that I have some kind of memory loss and I sometimes have a brain fog. This makes me feel a little nervous about giving any response in few situations. This also affect me sometimes in my business and I have felt frustrated and demotivated sometimes and I accept that.
Keeping in mind always that what happened was never in my control so keeping my will power strong I always tried my best to try to cope by exercising and meditating, talking to my closed ones this helps but not always.
I have taken a few meditation classes, and did the Shambhavi Mahamudra kriya to keep my body in balance. Somedays when my body is not feeling energetic, I have to skip these. Extreme tiredness and headaches cause me to skip these exercises.
Do I bother about “Why me?”? I don’t really get demotivated thinking about why this happened to me. I actually feel lucky that now I am able to sit for long hours, I recovered from what I was facing before diagnosis and work, can earn for myself and manage my life.
I resort to Art to cope – digital art and painting walls, have a lot of interest in painting and do a lot of DIY.
Overcoming the naysayers:
Have always been a sick kid in the family, my father told me when i was around 8 months old I got really high fever and fainted. Doctor said it was due to overdose of medicines. Being overdosed has always been my issue since I was a kid.
Have grown up listening to advice on what I should not do or eat, should not go out, what I should avoid because my family always cared for me a lot. I was even advised by my Uncle to take a drop of 2-3 years from studies while I was facing issues around 2010, but as I was strong and determined, I didn’t do that. I was admitted to the hospital for blood transfusions and treatment several times but I still studied hard and cleared the exam - my will power helped me here!
A few friends understood and have helped me with my studies. I feel that the young do understand but elderly who do not know me have a lot of curious questions on why I don’t eat outside, why I am taking so many medicines everyday and was given examples of how autoimmune conditions can be cured without medicines. I was even told that it is all in my mind and I am making my body weak.
Relatives were worried about my marriage prospects and asked my parents to tell me not disclose to anyone. But I am determined to be open to whomever I marry. I had to explain to my parents very politely about the risks of anyone I marry not being able to adjust to my condition. I also convinced them that I would be fine focusing on working and being independent.
Road to financial independence
When I was young, I wanted to be an artist, fashion designer. I got selected for entrance exams with NIFT, but since my health was not good, I had to skip those plans but then I planned my life keeping in mind that I have some health issues because I wanted to make sure that I don’t suffer in my old age. Even after recovering in 4 months post steroids in 2013, still had issues of sitting for long, pain, fever. Gave myself 3 years to train my body and keep myself healthy to get into a course in the institute. Family was worried that I would get sick again if I enrolled in a course and travel. So I changed my mind and I opted for - MBA course (2018) in my city and started exploring different fields in which I can gain expertise. I found out about Digital Marketing and started working towards it which worked. I got a job later and worked with people with similar mindset of doing something unique. Together we quit and started our own agency 2.5 years ago. Currently I am running my own agency which offers digital marketing services and much more.
Being a perfectionist and hard-working, I exhaust myself and my body doesn’t accept that. People who I work with understand and ask me to rest. But I feel I should work more.
I am 26 now and feel I should be going out Travel, explore nature and enjoy life!
But I also realise that this is the time when I have to focus and earn to be financially independent and be ready to bear my personal as well my medical expenses.
I should have taken some counselling to help me pursue what I wanted to do, but currently things are going good & smooth.
Financial implications – currently my father is taking care of all my medication, has taken the needed insurance. But I do need to prepare for the future.
What I would like to say:
To the parents of children with Lupus:
Few patients through my pages connected with me and through them I get to know a lot of suffering they face, Please understand that your child is going through a tough time and your understanding will help. Avoid telling kids they are a burden, that they are suffering because they do not pray enough.
Connect with the Lupus trust, they are very nice and understanding and you will feel accepted.
To the Lupus patients:
Even if your body feels some weird symptoms, pain or demotivation, don’t feel depressed. Get help from others and treat this as a phase in life.
What happened, is already done you can’t change it but now you can work on it so you can make your future good and your future self doesn’t have to suffer! Live your Life the way you want!
My Worst experience There were a number of years when doctors did not take my condition seriously. 5-6 years they did not understand the condition and did not diagnose it rightly.
Best Experience My doctor who diagnosed my condition understands me so well and he does not ignore my condition and listens to me.
This is part of a series on Juvenile Lupus in collaboration with Lupus Trust India
