The toughest phase of my life

Life is unpredictable and full of shocking surprises. No one can predict what will happen in life. Nothing is finite in life. It is a bouquet having flowers of care, sadness, love, affection, struggle, pain and happiness. Each one of us has a different perception towards life. But the truth is that we want peace in our life.

My life taught me a lot. It gave me opportunities to understand the reason for my existence, to discover my ultimate goal, to smile in pain and realize my hidden potentials. There was a time when I became weak and lost all hopes. It was the time when my strength gave up and I felt helpless. It was the time when I thought that I had lost everything. It was the time when I lost my dream forever.

I lost my granny in 1999 due of Myocardial Infarction attack. She lost her life because of the negligence of the treating Cardiologist. The news of her death came to me as a shock. I was very close to my granny and loved her very much. Her death created a void in my life. The death of my granny hit me hard and I decided to pursue my career in medicine. This is how my dream was born.

Years later I got an opportunity to turn my dream into a beautiful reality. I went to the medical university and started my career in medicine. I didn’t realize that it would be difficult for me to deal with my bleeding disorder while pursuing my career. Somehow I ignored the existence of my bleeding disorder and went ahead to live my dream. The testing time came when I had to live in the university hostel, manage my bleeds on my own, and deal with my other medical conditions without anyone’s help. At the same time I felt homesick. It was the first time I remained away from my home for such a long time. I missed my mamma and my home very much.

I had no friend and I was all alone. I remember being in my room and treating my bleeds on my own. I made sure that no one comes to know about my bleeding disorder. During my Physiology and Anatomy practical classes I was always extra cautious. I used to make sure not to get a cut or prick during dissections.

One day our professor asked the class to prick our finger because we were supposed to perform a practical on blood cells. I tried my best to escape from pricking my finger. But when my laboratory partner didn’t agree I went to my professor and told her about my bleeding disorder. She allowed me not to prick my finger and take blood sample from some other student so that I could perform my practical. Not all the professors were compassionate beings.

Moreover, hostel life was really challenging. Ragging was an important element of every hostel fresher. It was my first day of menses and one of the seniors came to rag me. She asked me to stand in a particular posture for about an hour and I could not deny her order. It was frustrating and I felt extremely alone. I tried my best to adjust well in the hostel and manage my bleeds effectively and other medical conditions on my own. Ultimately I gave up. I took the decision of returning back home from the medical university. I never thought that I would be the one who would end the biggest dream of my life. It was really painful for me. I won’t forget my days of struggle. When I look back my eyes get tears. I try not to regret but to accept the reality.

Doctor shopping

It was extremely difficult for me to get a diagnosis of bleeding disorder. My bleeding disorder was diagnosed accidentally. I went to the hospital for a Gastroenterology consultation but ended up knowing about my genetic bleeding disorder. I had been to numerous doctors and hospitals for my treatment. Sometimes I went to the doctor for my IBS and sometimes for my Raynaud's disease or other medical conditions. So in this way hospitals became my picnic spot and doctors my picnic companions. 

Coming back to Gastroenterology consultation now. The doctor examined me and advised me to consult a Gynecologist as soon as possible. He suspected some pathology related to my pelvis. There was some inflammation in my pelvis which was causing pain to me. And the pain was unbearable. 

As per the advice of the Gastroenterologist I went to a Gynecologist in the same hospital. She also examined me and started taking my history. Then she asked me about my menstrual bleeding, its duration and frequency. I told her that my menses were always heavy, profuse and prolong. I also mentioned about purpuras. The gynecologist got a hint and started asking about my family history of bleeding disorder. I told her that my granny, aunt, mother, cousin and sister suffer from the same symptoms. She immediately ordered me to get my blood screening done to rule out any possibility of bleeding disorder. I didn't ignore her advice and went for my blood screening test the very next day. At the back of my mind, I always knew that the way I bleed was not normal but never expected the prevalence of a genetic bleeding disorder in my family. Von Willebrand's Disease runs in my maternal family. The concept of hemophilia and other bleeding disorders was introduced to me when I was in grade 9. It always allured me. I was curious to know more and more about females who were sufferers of bleeding disorder. My teacher had little knowledge about females who suffered from hemophilia or other bleeding disorders so I could not get answers to my questions at that time. Fortunately, I was diagnosed with a bleeding disorder and got to know a lot about bleeding disorder and its impact on the lives of girls and women.

After a month my blood screening report came. It confirmed that I had a bleeding disorder known as Von willebrand's type 2. I was not shocked. Actually, I was waiting for the event to take place. My mother felt a little low and started blaming herself for transmitting the defected gene to me. She became emotionally weak and her sadness made me helpless. I tried to console her by saying variety of comforting words and quotes to her. But a mother cannot see her child in pain. The same thing was with my mother too. After a week we again went to the gynecologist to show the report to her. She recommended us to see a Hematologist. Now the real challenge came into existence. I remember that my first hematologist recommended me to start taking hormonal pills which made my condition worse. He never paid attention to my symptoms and always dominated. One day the doctor got angry and asked me to consult some other hematologist. It was a real relief for me. It is very important to pay attention to what your patient is saying. Neglecting a patient is the most cruel thing which a clinician can do. 

Now my search for a sensible and compassionate hematologist began. Ultimately I found a doctor who was not like my earlier hematologist. The new doctor gave me the charge to decide about my treatment. We used to talk at length before starting any treatment modality. It gave me an opportunity to keep a track of my treatment and how effective it was. My doctor has always been an understanding and kind person. He always considered my request and answered every query which I had. Unfortunately, there are only a handful of such doctors surviving in our country now.

So, after a long journey I found a doctor who always believed that patients are the greatest teachers and never ignored them. I spent a major part of my life in doctor shopping. What else I can say.

Bleeding and my school days

My school days were not like a normal child's school days. Those days were difficult and challenging for me and my mother. We had no clue of a bleeding disorder in our family at that time. I started having menses ten years back and it proved to be significant event of my life. My bleeding disorder was diagnosed on the basis of my abnormal menstrual bleeding and flow. So, my school days were not easy and I never had fun. I was always sick and never participated in sports activities either because of my profuse bleeds or reactive arthritis.

One day I asked my classmates about their menses and its pattern. Everyone started sharing their experiences. I was getting an idea that my menses pattern was quite different from theirs. Then, suddenly one of my classmates asked me about my menses and its duration. I told them about my heavy, profuse and prolong menstrual bleeds. Everyone was astonished to hear my experience. One of them said " You are abnormal. No one bleed for more than 3 or 5 days. You bleed for 15 to 20 days a month . We don't believe your words". It was difficult for me to convince them about my menstrual pattern because I was undiagnosed at that time. I had no answer to their question.

It used to become difficult for me to attend school during my bleeds. Attendance was another issue. Fortunately my attendance never fell short. 

Because of my unexpected menstrual bleeds and other medical conditions I never lived my school life. I had few friends who never understood my bleeding condition. My teachers were very strict about academic performance. So I was always into books and never enjoyed my adolescence because of the fear of untimely bleeding. 

I feel that having a bleeding disorder creates problems for the sufferer especially for someone who is in school. No one understands the child's bleeding disorder complications. It is more complicated for girls who are in school. Menstruation is a natural phenomena and overlooked by many of us. My teachers had no information and knowledge about bleeding disorders. Only biology teachers were aware of hemophilia and they never believed that females could also suffer from any bleeding disorder. It is unfortunate to know that despite of tremendous scientific advancements in our country, school kids who have bleeding disorders are not treated and cared in an appropriate manner. The need of the hour is to make our schools aware of bleeding disorders and their impact on the lives of girls.

Why I hate monsoon

I do not like monsoon at all. Monsoon is a season which I hate the most. It has a history behind it. My dislike for monsoon started in the year 2000 when I was a school kid. The same year (May 31) I attained menarche. I went to school after my summer holidays. I was excited to get back to my academic routine. Everything was going at its own pace. Then one day my class teacher announced about our class picnic. Everyone was really happy to know about our class outing. Our teacher informed us the place where we were going for our outing. All of us started making plans for our class outing. Each one of us was really really excited as it was the first outing organized by our school. My school always emphasized on academics but never underestimated extracurricular activities. But picnic was a dream for us.

The final day came. It was our picnic day. I was the only one who was sad and irritated. The reason behind my sadness and irritation was my menstrual bleeding. Unexpectedly, my menstrual bleeding started the day before my picnic day. I told my mother about it. She cheered me and advised me to go for my picnic. Without thinking about the aftermath I went for my picnic. At that time, I was unaware of my bleeding disorder (Von willebrand's disease). It was really unfortunate.

I went for my picnic. I was not feeling comfortable as I was bleeding badly. I tried my best to behave normally and hide my pain. It was difficult for me to jump and yell  like other students to announce my happiness. I preferred to sit at one place because of my heavy and profuse menstrual bleeding. I was enjoying by watching my classmates. After sometime it started raining heavily. I was wet from head to toe. It was really really disgusting. I wanted to run away from there. I was regretting on coming for picnic. Life is a challenge when you have a chronic and lifelong disease. The rain didn't stop and I was getting wet and more wet. I was bleeding and getting wet in the rain at the same time. It was extremely irritating. I cannot forget that day in my life. I was helpless. No one was there to help me. 

It is difficult for me to pen down my drastic experience with monsoon. It has been ten years now but this experience has not faded from my memory. So, whenever monsoon begins I start worrying about my menstrual bleeds. It is difficult to manage your bleeds when it is raining. I just don't like getting wet in the rain, especially when I am bleeding. Monsoon is about to approach and I am getting nightmares.  

Hi

Von Willebrand's Disease is a genetic bleeding condition. Life becomes a challenge for girls and women with Von willebrand's disease. Survival remains a big question. VWD has become my identity to some extent. It has also given me opportunity to discover my inner self and understand the reason of my survival on this alluring planet - Earth.