Autoimmune Hepatitis is a serious condition and here’s my story
Four years ago today, on the 11th of February 2015, my mother came into my classroom and rushed me to the doctor.
After a month of blood tests and a biopsy of my liver, I was diagnosed with Autoimmune Hepatitis one month before my 17th birthday.
Autoimmune Hepatitis is a life-long liver disease where the immune system attacks the liver. There is no cure, and the only course of treatment is steroids and immunosuppressants. When we first found out about this diagnosis, I remember that I didn’t exactly understand what was going on. All I knew was that I would have to take steroids for some time and I would be okay. But no one warned me. My doctor, as incompetent as he was, never told me the potential side effects of this medication and so when I started to experience them, I was not prepared.
What would you do if, at 17, you lose half of the hair on your head?
If your face swelled up so much that a classmate asked you if you had gotten cheek implants; if you gained so much weight in such a short period of time that even family could not recognize you? I became severely depressed and had panic attacks on a pretty daily basis. But I was so determined to act as if nothing was wrong as if I could handle myself the way that I always had that I pushed myself too hard.
Everything got to me and I started experiencing seizures that were brought on by stress. This was the last straw; not only had I lost the way that looked but I had also lost the ability to control my body. I would convulse in public at times and had to endure the fact that the entire world was staring at me.
It was difficult being the “elephant in the room”. So how did I come out of it? My family.
They were all so incredibly supportive throughout the entire process from diagnosis to treatment. They gave me the option of psychological therapy without pushing me towards it, allowing it to be my decision. They gave me my space when I needed it the most and have perhaps even saved my life. I was allowed, no encouraged, to leave school for a year to focus only on myself. That was perhaps the most difficult time because I was always so used to being busy and “on the go” that suddenly sitting at home was a big shock. But on the upside, I got to spend a lot of time with my dadi, the one person who I am closest to.
One and a half year later, after many ups and downs and no stability of my condition in sight, my father took me to the US to find a doctor
We were looking for someone who could treat me properly because my condition is not only extremely rare in Pakistan, but I also fall in the 10% of patients who do not respond to regular treatment.
This was the turning point in my entire journey. I was lucky enough to find the best doctor who even agreed to treat me long-distance. Alhumdulillah, today I am as healthy as I have ever been in the last four years.
Yes, the pain is a constant companion along with biweekly blood tests, strong medication and the ups and downs of my disease, but if four years ago someone asked me if today I would be where I am today, I would never have believed them. Four years down the line, I am definitely not the same person I was at 16. Being diagnosed with a serious illness at such a young age is extremely difficult – what’s even more so is when the treatment can be more testing than the disease itself, but there are ways to cope.
For me, it was having my loved ones around me, finding distractions in hobbies and most importantly putting my faith in Allah.
More than anything, this entire experience has been a test of faith and having come through it I feel I am more mature and I found resilience in myself that I never knew was there. It has taught me the importance of patience and love.
If you or a loved one are going through a hard diagnosis, try to be supportive of each other and take one day at a time.
Celebrate and enjoy the good days when they come, but don’t let the bad days get you down. And remember waqt kee achi baat ye hi hoti hai kay vo guzar jaata hai…
Cover Image Via Sahar Basit