Have you ever been told that you are imagining that you are sick? Did you trust your body or the person who told you so?
There are umpteen reports on women being judged and told they are 'exaggerating', 'thinking too much', or 'it is all in the head' when they complain of pain or sickness. The Health Gap is real!
It is ridiculous that getting a genuine diagnosis is tougher for women in this time and age! This is why we advocate being more aware and believing in ourselves.
Read this inspiring true story of how this woman trusted her body more than anything/ anyone, proving that self-health advocacy is the only way out of sickness when one is engulfed by mistrust.
The deceiving symptoms
One April evening in 2021, just before a major presentation that was supposed to go a long way in building my career, I felt an intense vomiting sensation. This was followed by fever and shivering; 5 blankets were not enough in the heat of an Indian summer. I somehow managed to complete the presentation and crawl back to the bed and then the awful night began with thirst, heat, chills, and discomfort.
My family (I live with my Kaka (uncle), Kaki (aunt), and my older cousin) opined that this was all exhaustion, and I agreed with them. We had been road-tripping all over Sikkim for 7 days, driving around the length and breadth of the state for 7-8 hours every day with indifferent food and eating hours. Added to the fact that I had been working 14-18 hours all through 2020 (thanks to the impact of COVID-19’ on international financial markets), naturally, my body was going on a strike. The sensible thing to do was to take a break and actually rest up. I explained as much to my leader and took a few days off. I drank litres of water, ate mildly cooked but nutritious food, and popped Rantac (a medicine that reduces the amount of acid your stomach makes. It is used to treat and prevent heartburn, indigestion, and other symptoms caused by too much acid in the stomach) tablets to help with my increasingly failing digestion.
But things did not improve, in fact, they took a turn for the worse. I started developing severe bloating and constipation issues ("How very inelegant," I, the Queen of sophistication thought!); I have always had a very healthy gut, and this turn of events took me by surprise. When home remedies did not help me get better, I reached out for medical help.
Tele-consultations and reassurances
April-May 2021 was a horrific time for India, at the peak of the second Covid-19 wave, when every family faced a tragedy and hospitals had no beds. The only thing I could do was to get an online medical consultation with a Gastroenterologist and go over my complaints with him. He advised that since I had been traveling, I probably developed some gut issues; he advised me to get the basic kidney and liver function tests and prescribed some milk of magnesia and medication to relieve gas. I dutifully got my tests completed; both the tests came clean but I still went back to the doctor. This time, however, he was not available, and I was assigned another specialist; this particular gentleman looked through my reports and said I was fine. According to him I was just suffering from mild IBS (irritable bowel syndrome) and needed to make lifestyle changes to improve my condition and hung up without even bothering to ask me any probing questions to understand my “lifestyle” or making any specific suggestions. I was not sure as to what those changes should entail because I worked out, ate home-cooked food, and never smoked or consumed alcohol.
In an effort to get a second opinion, I got an appointment with a third doctor, who looked over my reports, and said that I was healthy and should continue with the original prescription for another 10 days and I would be OK. I had been continuing with the original prescription for a month now, but no one had a fresh take on the situation and just advised me to go on for a few more days.
In the meantime, April had turned to May and my health kept deteriorating.
I was now constantly feeling bloated with a heaviness in my abdomen and suffering from severe constipation. I could barely eat anything and was losing a kilo every week and by mid-May, was painfully weak. In the mornings, I struggled to make it to the breakfast table and then crawled back to bed before getting up for lunch that I could not eat. My Kaki (Aunt) tried making a host of delicious wonderfully cooked meals, but I could not take more than a few bites. I had constant hot flashes and developed a pattern of intermittent fever, which would come and go every few days. All this while, all the doctors kept telling me I was absolutely healthy!
I believed my body and persisted
At this stage, I lost the trust in virtual consultations as I could still feel that something was not right with me. One day, I decided to take matters into my own hands (as I have habitually done for almost every major decision in life).
I carefully went through my symptoms, plotted days that I had a fever, days that I felt better or less bloated, and came to the conclusion that right after my periods, I felt a lot less bloated.
I had always been a heavy bleeder and I thought that there may be some correlation between my illness and my gynecological health.
I called a friend, who spoke very highly of a Gynaecologist, and set up an appointment with the said Doctor. The good doctor spent 50 minutes discussing my medical history and probing for details; she reviewed my old reports and did not seem overly concerned about them. During our conversation, as I tried to explain my malady, it seemed like she thought this was an imagined illness, probably involving some kind of psychological aspect rather than a purely physical problem. While she was too kind to phrase it like that, I could sense the implication and could fathom why she should feel that way! After all, on paper I looked like a perfect loony candidate – 39 years old, not married, living with a cousin and family, lost her parents in a succession of 5 years, relatively successful in a career with all comforts of a good middle-class Gurgaon home, complaining of illness when the tests were all green. But the Gynaecologist, despite being skeptical of my claims, at my insistence on the increasing weakness, agreed to help me. She ordered some basic blood tests, gave me some multivitamins, and strictly told me to not Google any illness or let my imagination run wild and think I have Cancer!
The only clue
The blood tests came back in a day (the boon of modern technology) with the usual results: marginally pre-diabetic, a slight variation in cholesterol, etc. The only thing that stood out was my CBC report. The CBC or Complete Blood Count report evaluates the RBC and WBC count and overall platelet count, which help understand and detect diseases. The report said that my haemoglobin was low, but historically my haemoglobin has always been low. The challenge, however, lay in another direction: the platelet count. The average platelet count of a human being is supposed to range between 150 to 400 thousand/ per microlitre; mine reached the top of the charts with a count of 536 thousand. The doctor asked some questions about the possibility of Thalassemia Minor, a very, very fancy name for a type of Anaemia. It made sense that something like Anaemia would impact me – my mother was severely anaemic, and all the weaknesses seemed to support the narrative beautifully. But it still did not account for the heaviness in my abdomen or the bloating. She advised that I needed more blood tests and on my insistence on the bloating, finally prescribed an ultrasound.
THE diagnosis
Two days later, on a very hot June afternoon, suffering from fever, breathlessness and severe weakness, in the company of my cousin and a friend, I went under the ultrasound probe and then my world slowly began to unravel. The test revealed a huge mass, about 9 inches at its widest and 5 inches at its narrowest along the walls of my abdomen, pushing my digestive organs to a corner. An MRI was immediately ordered. I also found another doctor, who took my case seriously and immediately ordered a biopsy. After nearly 3 months of complaining about being unwell, I was finally diagnosed correctly by a panel of brilliant doctors, who restored my faith in medicine – I had two Stage-3 primary cancers – ovarian and endometrial.
I am glad I did what I did
The thing about Cancer is, most of the time there are no symptoms; at least nothing that stands out. You have a fever and/or weight loss but that could be because of so many reasons, including exhaustion. But, as someone who is going through the ordeal, you would know.
No matter what anyone tells you (even those with the fanciest of medical degrees), you should keep advocating for yourself until someone is able to help you!
It took me 5 different doctors, including the Gynaecologist who ordered the blood test, before I found a world-class medical team to determine my condition and design my treatment. I knew something was wrong, and my body was not working like it should, though all my tests were clean. So, despite being politely told that I was imagining my illness, I kept talking about it until some action was taken. Your body is your best guide; I have always been supremely healthy, but my body was giving me clues – the heaviness, the bloating, the slightly more comfortable feeling after a period. I needed to sit down and look over my own symptoms, to help the doctors help me! At the end of the day, you have to take care of yourself.
P.S. To end the story, I underwent surgery and HIPEC (hot chemo given during surgery) and then 6 rounds of Chemotherapy; I am now in recovery and hopefully will keep getting better, every day! Otherwise, I know whom to trust, my amazing doctors who finally found the disease, and my body which helped them find it!
PPS: Medical menopause and what I have had to deal with
I was 38 when I diagnosed with two independent Stage 3 cancers–Ovarian and Endometrial. I was fortunate enough to have a medical team that explained the nuances of the treatment and its effects. I was wholly aware of that I will go through medical menopause and knew that I cannot give birth post-surgery.
I was/am single and had been long convinced that I will probably never go through the societal construct of marriage and motherhood. As my diagnosis came through, I also understood the science and the needs must approach of radical hysterectomy to save my life. Yet I struggled to adjust to the new reality. The idea
that the choice of giving birth, when I still had almost a decade left of child-bearing years, hit very hard.
I was fortunate that my mood changes were small when I began my treatments,
but some things still triggered me despite regular yoga, meditation, and prioritizing my
mental health.
A friend sending me her baby’s pictures to “cheer me up “or an aunt telling
me that my hysterectomy was not that tragic because I was always single and past my prime.
Acts of unkindness or rudeness, which would usually roll off my back, became mental
breakdown episodes that lasted days. My mind would brew into a storm on bad days,
causing emotional wreckage that took months to fix. Physically, I am dealing with a catch-22 situation where, in order to curb my chemotherapy related fatigue, I needed to work out more. But in order to work out, the bone density was/is so weakened that even the mildest of exercise increases my fatigue. Women with partners have shared that they have issues with intimacy and cannot seem to find the urge or the joy of being with their partners.
None of this is easy, none of this is simple and some of us with the best medical attention, still have to work very hard to cope with it every day. It is the crucial for medical teams to have mandated programs to help patients with medical menopause. Partner or family counselling should be available to all caregivers.
And even more importantly, women themselves need to advocate for their health and its needs.
They should face their problems and ask for ersonalized treatment instead of ignoring discomfort. This act of participation by them, away from a sense of shame and guilt, alone will ensure their complete wellbeing.
After all, no one knows you better than you!
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About the author
Jayanti Chakraborty has had a diverse education, with degrees in English Literature and International Relations. Her day job is working as a Strategy and Project leader for a financial conglomerate. She is also a part-time writer and blogger and full-time cancer and health advocate (you can look her up at https://www.instagram.com/candidcancerconversation/?hl=en). Her life revolves around her sister, some old friends, a lot of travel and books, and books and some more books and make that a few more books!