Annie Verghese, 53 has been fighting Sjogren’s Syndrome for 10 years now, along with a host of other issues. She talks about her difficult health journey, being a patient and a caregiver and the effect of her health on her life.
EARLY HISTORY
I was diagnosed with Sjogren's Syndrome in 2012, when I was around 43 years old.
Around the same time I developed diabetes and also had high BP problems which led to a mini heart problem. After undergoing angiography, I was cleared with 'no problems'.
As a prologue, I would like to talk about my life before Sjogren's. I got married at the age of 21, gave birth to two baby girls first.
At the age of 29 I gave birth to a son through C section. At the same time, my husband got transferred to Rajkot. Though my parents were with me, they couldn't help me with the chores related to children's school, purchasing groceries etc. So from the fifth day of the C-section I used to do all the chores and suffered from 21 days of fever. According to my Immunologist, this fever might have triggered the abnormal behaviour of the white blood cells because I am the first person in my family to have this syndrome.
In 2001, my father, saddened by my stressful life expired. I had promised him that one day I would become 'somebody' from 'nobody'. I got a job in school as teacher, did double P.G, became the principal of a school. From the age of 30, I have been working along with the pains (body and joints), fever, constant stomach issues, migraine, kidney stones (four episodes), 3 surgeries (intestinal adhesion, incisional hernia, uterus removal), frequent admissions to hospitals, vertigo, anxiety attacks. I have frozen shoulders as well as essential tremors. My legs are so weak that I can't stand for more than a minute. I have to either keep walking or sit and I also suffer from severe fatigue. Most of the time I was prescribed depression medicines, which disturbed my stomach and I decided to discontinue with the medicine.
I quit my teaching career and am now working as an IELTS examiner. Though I have achieved the goal and fulfilled the promise given to my father, it did not come easily. I had to struggle because i did not want to quit and lie down in bed as expected of a patient. Some of the doctors and employers in school felt that I made up my sickness, because I did not look sick or act sick. I love to dress up and while in the hospital too, I kept myself looking fresh as it used to sometimes soothe my mental pain.
My mom who was living with me since 2001, expired on 16th April 2022, which is a mental set back for me. She had fractured her leg on November 21st, 2021. After the surgery, she had post operative mental trauma and severe dementia. Taking care of her was also a huge stress for me because she had turned aggressive.. I had a day care attender but I used to take care of her during the night shift. It resulted in many sleepless nights. Diaper changing was like fighting a war. Because of her dementia, she used to beat, curse, even take potty out from the diaper and throw around the room. During the course of caregiving I broke one of my toes.. Yet I miss her now that she is no more.
PRESENT CONDITION
As I am ageing, my difficulties due to Sjogrens and other chronic illnesses are increasing but I still have the strength to fight. Pain is a part and parcel of my life which is difficult to explain to people and even to doctors. It is very difficult to make people understand my chronic illness because I have heard people say, "You are faking it, you don't look like sick, may be you want to avoid working". It took a few years for my family members to understand and accept that I am sick. I often feel guilty that I am always complaining or talking about my aches and pains and sickness. But my husband is now very supportive.
ADVICE FOR OTHERS
The advice I would like to share with the patients is that the battle is ours, we have to fight it alone with the support of loving family members. These aches and illnesses have somewhat put me in a cocoon, with no friends and no socialisation. But it is wrong because when we do this it makes the battle more difficult. I have taken psychological help and slowly recovering and coming out of hibernation. All these years I have lived for others, thinking that my sickness should not inconvenience them, but that makes you more sick.
Recently I had colonoscopy done and a polyp was diagnosed as pre cancerous. I am not deterred because I tell God - “you have given me a lot of pain (physical and mental), which has made me strong”.
