Living with Lupus – A medical professionals personal journey of triumph over the disease
Annually, May commemorates Lupus Awareness Month, which aims to increase public understanding of this disease and lobby for funding to further research and educational programs. Activities are held throughout the world which ultimately culminates on May 10, World Lupus Day.
Dr. Chetna Govind was at the peak of her life, at age 22, she had qualified as a Dentist and was a practising community service practitioner at Dundee Hospital. Then, during the later part of the year what she attributed to stress was eventually diagnosed as Systemic Lupus Erythematosus (SLE).
We recently caught up with Dr. Govind, who is currently a fifth year medical student at the University of KwaZulu-Natal, to venture into her life, experiences and thoughts during this important month.
SAMSA: Can you please tell us what Lupus is?
Dr. Govind: Systemic Lupus Erythematosus or Lupus as it is commonly referred, is a chronic inflammatory disease with a broad spectrum of manifestations with the potential to affect any organ or tissue. It falls into the autoimmune spectrum of disease with the skin, heart, kidneys, brain, lungs, bones and joints being commonly affected.
Autoimmunity refers to a pathological process whereby the immune system becomes overactive against tissues and substances normally present in the body and attacks them. This happens at a molecular level whereby a protein referred to as autoantibody (a component of the immune system) causes damage.
SAMSA: What were the earliest indications that made you seek medical advice?
Dr. Govind: I was extremely fatigued almost all of the time despite sleeping well at night. I also suffered from intense headaches, hair loss, stiffness in my joints, generalised body pain as well as water retention. Being a newly qualified dentist and doing my community service at the time, I initially attributed most of my symptoms to being overworked, not eating properly and not getting enough exercise. The months preceding my diagnosis were filled with endless doctors’ appointments, medications and tests with no resolution. After a long period of uncertainty my illness finally had a name – Lupus.
SAMSA: From your experiences, what are some of the common misconceptions or myths people have of Lupus?
Dr. Govind: Being involved with Lupus awareness over the past few years I’ve been privileged to engage with men and women from many different parts of the country with diverse backgrounds. From these interactions, I have come to appreciate that almost all these individuals feel that the most difficult misconception to deal with is that people assume they aren’t sick merely because they “don’t look sick”. Some consider this a good thing as it helps avoid being stigmatised for having a relatively misunderstood illness. On the other hand, not looking sick means that Lupus patients often don’t receive the understanding, compassion and support that we sometimes need.
Another common myth is that Lupus is contagious. Because it is not caused by an infectious agent such as a virus or bacterium, this is not the case. It is also commonly believed that women with Lupus cannot fall pregnant. However, provided their disease is well controlled and pregnancy is not contraindicated, many women have normal uncomplicated pregnancies and deliver normal babies. Lastly, it is widely believed that Lupus is a woman’s’ only disease. Although it occurs predominantly in women, it can occur in men as well.
SAMSA: Since diagnosis, how have your views on life changed?
Dr. Govind: I once read that hardship prepares ordinary people for an extraordinary destiny and I believe that with all my heart. I think with an illness such as this, it is often just as hard dealing with life as a side effect of the illness over and above dealing with the illness itself. Receiving a medical diagnosis is not any easy feat, and it is certainly harder when it is of a chronic, often debilitating illness such as this.
My whole world had turned upside down. The headaches, hair loss and skin damage were just a few things that really made my new life unbearable at times – especially being a young woman. I was a fiery and independent 22 year old; newly qualified, with the world at my fingertips. My life was just beginning. Of course none of this was compatible with having an illness such as Lupus. It has taken me a very long time to understand and embrace the impact this has had and will have on my future. I have shed many a tear.
I definitely look at life with a very different pair of eyes these days. Being previously very shy and timid, I have learnt to become brave, not hide, and take ownership of who I really am, and who I want to become. Once you become fearless, you become limitless.
I would be dishonest if I said that I’m positive most of the time, I still sometimes find myself questioning “why me?”. I constantly have to remind myself not to be so hard on myself especially when I’m feeling overwhelmed. I’ve now decided instead to ask: “why NOT me?”. How can I use this supposed weakness and turn it into strength?
Learning to have faith and remembering that I have the potential to do anything has been an extremely potent lesson; far more powerful than any ideology of stigma and self-doubt. I make an effort to consciously remind myself to take a moment, take a breath, and remember that I have Lupus and it does not have me.
SAMSA: Has Lupus influenced your career path?
Dr. Govind: It most certainly has! For a very long time preceding my diagnosis, I had a deep seated need to do something bigger than myself; to feel fulfilled and happy. Although it is something desired by many, the actuality of living your truth and deepest desires is sadly rare. It took many years for me to heal and to convince myself that I was worthy of giving myself the opportunity to figure out how I was going to claim my place in this world. It is for this reason that I decided to pursue my lifelong dream of becoming a medical doctor. Sometimes the walk toward our truth happens in the most extraordinary ways; ways that we would never ever imagine.
SAMSA: What are the commonest signs and symptoms of Lupus?
Dr. Govind: Lupus encompasses a wide spectrum of symptoms and the onset of disease varies from person to person. The course of disease is characterized by remissions and exacerbations (“lupus flares”). From this we can see that no two lupus patients are alike; how and when we experience our disease varies.
A diagnostic challenge comes about because the disease itself mimics many other conditions such as cancers, infections and other autoimmune conditions. It is for this reason that Lupus is often referred to as “the great imitator”.
Symptoms include, but are not limited to: the butterfly shaped facial rash, photosensitivity, oral and nasal ulcers, hair loss (non- scarring alopecia), pain and inflammation in the muscles and joints, chest pain and breathlessness as a result of inflammation to the pericardium or pleura (membranes surrounding the heart and lungs respectively), impaired kidney function as well as a number of neurological problems including headaches, numbness, disturbances to ones’ memory (lupus fog) amongst others.
SAMSA: What advice would you like to give to other people who are living with SLE and their loved ones?
Dr. Govind: I think Dan Brown sums it up quite nicely: When we least expect it, life sets us a challenge to test our courage and willingness to change; in such a moment, there is no choice in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait.
Because of the waxing and waning nature of this illness, the key is learning to adapt. This isn’t your fault and you are most certainly good enough. With time, you will learn to acclimatise your life to new symptoms, medications, and alternate therapies, that may make life a little more bearable. For me this has been fundamental to my survival with Lupus and essentially life.
Learning to care for your new body is hard. Rest as much and as often as you can, be consistent with your medication and doctors visits and try not to stress. Easier said than done I know; especially in this fast paced, demanding world we live in.
Having faith in myself and believing that I could still achieve the dreams and goals I set out for myself before my diagnosis is what keeps me focused and strong. Even though it may be a little harder or take a little longer to do…. It’s okay! Taking a break and completely dissociating yourself from Lupus is so important. For me, I’ve discovered a love for baking and it has been the best distraction! So much so, that I have started my very own novelty cake business: Lady Cake by Chetna.
Every sufferer of lupus, experiences symptoms that affect their personal relationships whether it be with a friend, parent, spouse or child. Maintaining and sustaining these relationships is an important determinant to the quality of life lupus suffers have. The extent of the social consequences of lupus is vast and thus the key is communication.
SAMSA: What gives you the strength to achieve your goals, despite the setbacks you experience?
Dr. Govind: I gain reassurance by spending time reflecting back on my journey over the past 5 years and how much I have grown as a young woman, and as a doctor. Although this path has been difficult, disappointing and very frightening; I have gained a sense of self, peace and purpose as well as a greater empathy for my patients. These are invaluable gifts that definitely strengthen my conviction.
I am also extremely blessed to have the love, support and guidance from my incredible parents who have selflessly sacrificed so much; as well as my dearest friends who always encourage me to face my fears and never give up on my dreams.
SAMSA: What are your dreams and hopes for the future?
Dr. Govind: 2 years into remission, I have learnt so much in such a short time and I would love to continue connecting with different people with the hope that I can inspire others to find comfort, courage and strength whilst navigating their own Lupus journey.
Lupus Support SA, a Durban based PBO as well as Lupus Warriors SLE Support Group (an International support group with origins in Durban) have given me such a platform and I hope to continue to strengthen my relationship with both these organizations. If you yourself are a Lupus patient, or know someone with Lupus that may need a helping hand, please do not hesitate to get in touch with me. We are here for you.
Currently, apart from counting down the months to the culmination of medical school, I am working on writing a book about my experiences as I believe it is an incredible way to connect with others on a very personal level, especially with young women like myself.
My ultimate goal? To turn my solitary story into a shared vision; and of course, hopefully one day, contribute my skills and knowledge to help find a cure.
For more information on Lupus and connecting with other Lupus patients please visit the following Facebook pages:
With regard to campaign information and materials please visit (http://www.lupusawarenessmonth.org/) and feel free to get in touch with Dr.Chetna Govind on Facebook for more information or to gain further insight into her life and activities.