Living with lupus in Nepal: It’s not the end of you

If you have lupus, take heed of these three truths: 1) you’re not alone, 2) it will be hard, but it’s not the end of you and 3) it’s okay to not be okay. Don’t let lupus steal your joy and your purpose of life

Five million people worldwide suffer from lupus, yet many of us know little or nothing about it. I, too, had no idea what lupus was until I was diagnosed with it. In a nutshell, lupus is a disease that turns your immune system against you. Common symptoms include joint pain, fever, rashes, hair loss, chest pain, mental fogginess, fatigue, oral and nasal ulcers. Causes of lupus are unknown, but the reasons could be linked to genes, environment and hormones.

My feeling that I was unwell started off with joint pain, a fever that wouldn’t subside and loss of appetite. After visiting different specialists and conducting umpteen tests, I was told I had lupus and that it had affected my kidney. Although my rheumatologist had prescribed a few medicines, I wasn’t convinced. So I did my research and decided to do a biopsy.

After it was confirmed that I had Class IV Lupus Nephritis, I visited another doctor. He looked at my results and told me that my kidney was almost damaged. I was preoccupied with my new reality and felt alarmingly lonely and scared. Having left 0with no choice, I went to Delhi for treatment and recovered in no time.

In Nepal, lupus is widely under-diagnosed due to lack of knowledge in both the patients and the medical fraternity. According to Lupus Foundation, it takes an average of six years from the onset of symptoms to be diagnosed.

Patients can end up consulting different specialists for different symptoms: rheumatologist, dermatologist, nephrologists, immunologist and endocrinologist before they receive an accurate diagnosis. In Nepal, a lot of people with lupus would like to see the establishment of autoimmune centres, where a doctor coordinates to have a patient see different doctors, as in a cancer facility.

Being chronically ill can greatly impact a person’s mental and emotional well-being. Recent studies show that up to 75 per cent of the people experience neuropsychiatric symptoms, such as depression, anxiety, panic attacks, headaches and even psychosis. Visible problems such as a facial rash or weight gain from steroids can affect your physical appearance and self-esteem.

As women are predominantly affected by lupus, it brings significant costs into their personal, family and professional lives.

Especially in Nepal, one can feel socially isolated when you can’t participate in everyday social activities caused by the pain and fatigue.

Emotionally, this can lead to frustration and feelings of hopelessness. Uncertainty about the future is inevitable as questions of staying independent or managing life physically and financially come up. Dealing with family relationships can be difficult as the disease does not show outward signs. I have come across many patients who are unmarried because of the assumption that no one wants to marry a chronically sick person.

Some patients don’t feel comfortable sharing their lupus status with their spouse, further increasing feelings of fear, worry and anxiety. I have had several encounters where people looked at me with pity. At one point, just like anybody else, I lost all my confidence and forgot what it was life to live fully.

Having trudged that path and knowing how dark it can be out there, I now am obsessed with discovering ways to heal it. At one point I started searching for people who understood what I was going through.

For me, this place was Facebook, where you find people who have the same sense of suffering, fear, isolation and pain. I began blogging about what it was like to have lupus in Nepal and found people with similar symptoms I had over the years.

Then, I created a group called Lupus Nepal - a support group or community that is accepting, understanding, inclusive and willing to help each other. It aims to create a space to share experiences and learn from each other.

It’s about providing emotional support to you, your loved ones that comes from a community who knows what you’re going through. We started meeting to discuss about treatments and emotional and mental issues. We created our own ‘family’.

Besides external support, I realised that changing our beliefs about ourselves and about lupus is a necessary pre-requisite to heal naturally. We can do that by cultivating awareness about our emotions, relationships and surroundings. When that becomes a habit, we start recognising patterns and consciously recreate new thoughts and emotions. It’s not easy to embrace change or discomfort. When you’re in a constant battle with yourself that’s when you need to be committed to your goal of healing. Once you learn to master the rhythm, your body starts aligning with your mind and you feel the effect mentally, physically and emotionally.

When I feel overwhelmed, I try and take it easy and have cultivated the habit of meditating and doing simple exercises. Nature therapy, baking with children, painting, gardening or just reading work wonders for me. I have observed that house plants really help foster happiness and reduce anxiety, depression and loneliness.

After so many experiences with lupus, I have realised that it is possible to completely reverse your current condition and heal yourself naturally.

So if you have lupus, take heed of these three truths: 1) you’re not alone 2) it will be hard, but it’s not the end of you, and 3) it’s okay to not be okay. Don’t let lupus steal your joy and your purpose of life.