Some people stumble upon an autoimmune disease diagnosis when they least expect it. This surprise can come with its own set of obstacles, like emotionally processing the diagnosis while simultaneously addressing complex health challenges. This can often be daunting for someone first learning about their autoimmune disease – one they may not have even known existed.
Read Aashika’s story as she recounts the ups and downs of being suddenly diagnosed with Autoimmune Hepatitis – including the physical, mental, and emotional tolls – and finding hope, gratitude, and a new perspective on health.
Aashika's Story
On August 20th, 2021, I was on a family trip to celebrate my birthday, and my mother-in-law noticed that my face looked a bit pale and that my eyes were yellow. Even though I had been feeling exhausted, weak, and feverish for a week and had lost my appetite, I did not pay much attention to it. I assumed it must have been because of my hectic schedule for a month or maybe due to my ongoing periods. However, within a day, my symptoms worsened. I did not feel like eating anything and puked whatever I ate, my energy had gone down, my entire body turned pale, and I had a fever of 101 degrees.
The next day, I rushed to the hospital to consult my physician. Looking at the symptoms, it was clear that I had jaundice but to identify the root cause, the doctor asked me to do Hepatitis A,B,C,D & E tests, all of which came back negative. This meant the jaundice was not due to contaminated food/water nor any hepatitis viruses. My physician asked me to get an ultrasound test. The left lobe of my liver appeared to be shrunken in the reports. Usually, during a liver infection, the organ tends to get inflamed, meaning larger in size. But my case was different. Looking at the report, my physician immediately transferred my file to the Hepatologist, as the case seemed severe and required a specialist to diagnose.
I was diagnosed with Autoimmune Hepatitis.
Following my diagnosis, my doctor immediately put me on medication – including Prednisolone and Azathioprine – as well as supportive supplements like calcium, multivitamins, anti-acid reflux, and a hepatoprotective medication. I started taking high doses of steroids and Azathioprine, which took my body a while to get used to. The moment I took my pills, my heartbeat would pace faster, chills and shivers would run down my entire body, my nerves turned blue and I would sweat uncontrollably. It was as if I was getting a panic attack.
I was not sure if this was normal to experience. During my next visit to my doctor, along with my weekly LFT (liver function test) reports, I highlighted my symptoms. My doctor reduced the dosage of Azathioprine and asked me to continue it for one week and observe changes to my side effects, but there weren’t any. The symptoms were the same. In fact, I started getting terrible cramps in the palms of my hands and feet, the pain of which was so bad that it made me restless and burst into tears. I again went to him but he asked me to observe my symptoms for another week. After three weeks, my LFT reports showed that my bilirubin markings were coming down, but my GGTP (a test for liver damage) markings were increasing, and my symptoms continued. My doctor had me stop Azathioprine after analyzing that my body did not respond well to it and switched me to an alternate immunosuppressant.
Every medicine comes with its own list of side effects, and I happened to experience some of them. Initially, when I was on the maximum dose of steroids, I felt a burst of energy flowing through my body. Despite being so weak due to pre-diagnosis weight loss, I was surprisingly on my toes throughout the day. I felt restless if I sat idle for even a minute – that’s the kind of energy I was experiencing. Having said that, the energy was superficially caused by the drugs I was taking. From within, my immunity cells were getting suppressed, and my body couldn’t handle the extra energy. Because of this, the horrible cramps continued. It became difficult for me to walk even 50 steps without getting them.
After a month of continuing with the medications, my doctor had me do a Fibroscan to understand the extent of the damage. The doctor broke the news to me that I have compensated (1st Stage) liver cirrhosis. It took me a while to register this massive and shocking news. For several weeks, I couldn’t gather my thoughts; I was devastated mentally and emotionally. I won’t deny that the basic questions, “why me?” and “what have I done wrong?” and “this damn disease is not even my fault so why am I suffering?” crossed my mind.
I had no option but to gather the shattered pieces and build them into hope – the hope of survival, the hope of getting through this, the hope of faster recovery, and the hope of making everything better again. I started researching Autoimmune Hepatitis. Until I was diagnosed with it, I had never even heard of this term. When my doctor would explain it to me, my mind would go blank most of the time; maybe I did not have the courage to hear and understand what it was exactly.
This is when I started my journey towards healing.
I was able to take a complete break from work for 3 months, avoided unnecessary socializing, and did not indulge in things that did not do me any good. This gave me a lot of time to focus on my self-healing. I started reading self-help books, practiced yoga and meditation, inclined myself to spiritual healing and awareness, and modified my lifestyle and eating habits while the medicines were doing their job. Another thing that really helped me come out of this trauma was regularly penning down my thoughts, affirmations, and gratitude. I cannot quantify the extent it helped me, but one thing was certain: it calmed my mind to an unimaginable extent and I started to see positivity in everything and anything. Even the negative questions in my mind took a positive route.
“Why me?” changed to, “I am so grateful my disease was diagnosed at the right time and immediate action could be taken.”
I was also grateful that because of this disease, I was able to slow down, take a pause, and understand life from a different perspective. It turned me into a kinder and more empathetic soul.
It has been exactly one year where I am penning my story here; I am still taking my medication and undergoing the healing process. As my steroid dosage has tapered, I have experienced withdrawal symptoms along with side effects of taking steroids; increased appetite, severe backaches, extreme mood swings, anxiety, panic attacks, excessive gum bleeding, bloating, acid reflux, gastric headaches, emotional disturbance, constipation, tender muscles, easy bruising, dry skin, hair loss, body pain, drowsiness, loss of stamina, breathlessness and chills, and borderline depression – to name a few. This past year has been a rollercoaster ride living with this rare condition, and I won’t say that I am completely healed mentally and physically, but what I have extracted out of this journey is that our mental and physical health is only in our hands – treat them with care and it is completely okay to be selfish for the self-care. Nothing is above our health and happiness.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!
