On World Lupus Day, we ask Lupus patient advocates about their experience in Lupus management and what they think of the theme this year which focusses on "Let's make Lupus visible"
Vachasamrita
1. What has been the last year like in terms of challenges in handling Lupus?
I have been living with 8 years of Lupus, but since mine is a case of juvenile Lupus, it’s been aggressive with rare reactions and drug intolerances. Last year has been more about about handling the commorbidities attached to my treatments . I had low immunoglobulin, low iron, biopsies to evaluate how the new drug was working on me. In addition to that, adulthood in Lupus is different bringing with it the need to be responsible. You are balancing multiple aspects of life.
2. Any tips you have learnt about Lupus management?
With regard to the tips, I’ve learnt to handle Lupus, build the right support system, handle the pain, handle the daily nagging symptoms of Lupus. Right from waking up, learning what to eat, what sort of medications I need or external applications I can take to handle the pain. I realise that patients who have been battling Lupus over the last 7 or 8 years are the ones who end up needing a lot more comfort or counselling or support and redefining of their daily functioning.
3. ‘Let’s make Lupus visible’: Your comments on this year’s theme.
In terms of visibility of Lupus, I am happy to tell you that we have launched some 35-40 patient stories from Lupus Trust India and that itself is a huge step in making Lupus visible and ending the stigma attached to battling Lupus and this chronic illness. I think it starts with patients and families talking about it like talking about diabetes and hypertension, and its as simple as that.
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N.S. Naveen
1. What has been the last year like in terms of challenges in handling Lupus?
Last year has been all about survival. I got my kidney transplant in the month of October.
2. Any tips you have learnt about Lupus management?
Follow your doctor's advice and be patient with your treatment and body
3. 'Let's make Lupus visible ': Your comments on this year's theme.
Absolutely, much needed. It's high time we started making Lupus visible by advocacy, patient stories and other awareness posts. Not every Lupus patient is fortunate enough to survive a delayed diagnosis and organ failure, Not every Lupus patient is fortunate enough to be able to afford some of the highly priced Lupus treatment options. And not every Lupus patient is lucky enough to have a donor for organ transplant. It's important that we raise awareness about this condition and make it visible, so that people can immediately reach out to the doctors if they see any symptom, which in turn would improve their prognosis, make treatment options available that are affordable, and help people with Lupus lead a better quality of life
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KS Sangeetha
1. What has been the last year like in terms of challenges in handling Lupus?
In terms of Lupus, I am fine. There are some side effects like jetlag and etc after long travels, but I have learnt to manage. I have understood how much of stress my body can take, and I work accordingly. These past years of living with Lupus, I have learnt to be strong.
2. Any tips you have learnt about Lupus management?
Mind plays a major role no matter what you handle , whether it's stress or a condition. I try to live a life without worrying too much. Yes I do feel restlessness , but it's all about loving and appreciating yourself . My advice for others would be to know your own body and mind. Never over stress and try to go with the flow. Eat right and take your medicines properly and on time.
3. Let’s make Lupus visible’: Your comments on this year’s theme.
Lupus needs a lot of awareness. We need normal people to come forward and speak about it. Overall it's not about criticizing and judging them. Let's be kind, spread love and positive energy. Lupus is an invisible disease which shatters us from Inside, and affects us both physically and mentally. Only way to make it visible is to speak out for people with Lupus and keep supporting them with your friendship and kindness . They are also people with normal aspirations.
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Shambhavi Chaudhury
1. What has been the last year like in terms of challenges in handling Lupus?
With proper diet, regular exercise and meditation I have been in remission since past few years. My Lupus is at a stage where it doesn’t affect my lifestyle and decisions anymore. However, the only issue I faced was when i tested positive for Covid in January 2022. A very careful balance had to be maintained in managing medicines which are immunosuppresants as they are known to backfire in Covid. Thanks to the doctors, healthy diet and meditation, I tested negative after 11 days. Further to this, I developed a little complication in my lungs but with natural remedies like taking steam was able to get over the fatigue.
I am always very conscious of any lifestyle change and keep regular check on my vitals. I still visit my doctor once in every 3 months just to keep her updated about my current condition. By God’s grace I was also able to provide caregiving to my grandfather who was paralysed. In fact, the lockdown and work from home actually helped me maintain the balance well.
2. Any tips you have learnt about Lupus management…
I have observed that even a slightest change in the routine might trigger Lupus for a while. It’s very important to maintain routine. Discipline, acceptance and perseverance is the key to maintain a good lifestyle. One of the mistakes most patients commit is stressing over the past and be anxious about the future with Lupus which in fact make them more sick as Lupus is greatly triggered by stress. The mantra is living in the “now” with full acceptance of what it is.
3. 'Let's make Lupus visible' : Your comments on this year's theme.
Even in 2022, Lupus is an alien word to many. Lack of awareness and taboo involving Lupus leads to constant anxiety and low confidence among patients. An active support group ensures they have people who understand them and conversations can help them learn better management skills from other patient’s experience. It is disheartening that many patients are not able to pursue their careers due to long periods of treatment which further add to more financial burden given that Lupus is still not covered under insurance in India. Sometimes they also miss out on the govt exams competition due to age factor as most part of their youth is taken over by the treatment. Making Lupus visible will ensure a better position for the patients to be heard and a different set of laws with a few relaxations to be provided to them in order to support them financially and socially.
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Priya
1. What has been the last year like in terms of challenges in handling Lupus?
It has been a bit challenging for me to handle Lupus last year. I had skin sores over my hands, scalp and ears. Have lost considerable amount of hair. Good offers were coming my way as a psychologist and here I had to face my own health issues. But this education has helped me to handle this situation and my clients well. I bought a beautiful wig and went ahead with my practice. I feel proud of myself.
2. Any tips you have learnt and would like to share about Lupus management?
My tips are : Do not delay, visit your doctors. This will not only help you but also your doctor to handle Lupus well.
Do not neglect yourself, no matter how busy you are.
3. 'Let's make Lupus visible ': Your comments on this year's theme.
Talk about it. Do not hide. I never hide my problems but I make sure that I tell my problems along with solutions to the world.
