Skip to main content
Submitted by Heal with Ishita on 16 July 2019
A young woman in a red dress standing next to a palm frond

At 20, Ishita Biswas, a Lupus patient, has been through a lot of pain and medication. She has also had to battle the ignorance of people around her. But she has learnt to come to terms with her condition and even wants to reach out to others in similar situations.

I am a 20 year old woman suffering from a condition called Lupus or SLE (Systemic Lupus Erythematosus) which is a systemic autoimmune disease that occurs when your body's immune system attacks your own tissues and organs. Since there is still and always has been a sad lack of awareness of the condition, I have spent half my childhood explaining to people what exactly I am suffering from. Very few people actually knew about the condition Lupus. Lupus (SLE) can affect the joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus is a chronic illness and is not known to have any cure till date.

Diagnosed with Lupus (SLE) at 13 

The first symptoms of Lupus were visible from the 10th day of my birth. I have had 104- 105° F fever every single month since then. Joint pain, lethargy, rashes, headaches were a part of my daily life. My family consulted as many doctors as possible across India but I was misdiagnosed since lupus is not easily diagnosable. In 2013, Dr Sukumar Mukherjee diagnosed that I have juvenile SLE stage 4/5 along with nephritis and hypothyroidism. Lupus had damaged both my kidneys.

I was only a 13 year old back then, but I took chemotherapy drugs, took cyclophosphamide, methyl prednisolone, mycophenolate, methotrexate, Hcqs, thyronom and high dosage of steroids. The side effects of drugs were devastating. The vomiting sensation of drugs, the weight gain and the moon face of steroids had very bad effect on my mental health as well. As a child I was unable to understand what exactly was the problem with me.

I continued my schooling, despite all the physical discomfort that I was going through. People never understood what a tough phase I was going through. People commented on my looks, some said you are lucky you don't have cancer at least, few people even felt I had a contagious ailment. But on the contrary, external germs contracted from other people could actually cause a lupus flare in me. I got support of very few people since childhood except my family members and doctors. But some people started understanding me later on, and I got a lot of support during my college days. My mental health deteriorated but I faced everything with a brave heart and I am glad to say that I recovered fully from that depression.  I have even consulted a psychiatrist in 2013 and was on medication for about 6 months, after which I became alright. I managed to score a high 93% in my boards even though I had lived with so much physical pain and discomfort. I was stable for a few years after this. But I was undergoing rigorous treatment and lupus flares were more or less normal.

Near Death Experience 

My disease relapsed in August 2018 during my final college examination. But I forced myself to appear for the exams with 104°F fever after which I had to be hospitalised. I was in ICU for 13 days under ventilation. I had a massive congestive heart failure with myocarditis. My lupus relapsed and it manifested in another chronic illness named macrophage activation syndrome. With this, my kidney was not working properly due to nephritis and ulcers were common. My family was told that nothing could be said whether I was going to live or not , but they can of course try. After the 15th day, I recovered slowly and my senses came back. I stayed in 3 different hospitals for about a month. When I returned home, I was crying, not because of the pain I had been through, but because I had got a second chance to live. . I was confined to the bed for about 4months after that and to my house for about 7 months. I was not allowed to go anywhere except to the doctor's chamber for check ups. This time I stayed strong. I was determined not to slip into the depression I had undergone in 2013-14. People around me felt that I was perhaps unable to handle the pain.

Not Giving Up

But I had actually started working on myself. I started meditation, while I was laid up in bed for 4 months. I am still not allowed to travel except by car but I am continuing with my Bsc Major in Psychology from Bethune College, Calcutta. I am very grateful that I am still alive (huge thank you to Dr Sukumar Mukherjee, Dr Parthajeet Das, Dr Subhasis Roychoudhary, Dr Aruna bhat, Dr Rammohan Bhat, Dr Rajiv Sinha and my whole family, friends who supported me till date ). I started creating awareness through YouTube channels and other forms of social media. And found support through various groups including platforms like PatientsEngage. I started my online counselling page where I started advising chronic illness sufferers how to live with the chronic Illness. There is a huge lack of awareness and empathy which need to be activated among common people.  I want everyone to be grateful for whatever good they have in their lives. We should not get bogged down by the difficulties in our lives, one needs to believe in oneself. Living with a disease or a condition is tough. But at least, we have the means to heal ourselves, unlike so many others. I will try and help people always. Your disease does not define you. And in the face of distress and pain, one should not give up, but stay strong and positive and never lose faith in oneself.

Condition