Twesha’s Autoimmune Story

MEET TWESHA

Hi! I’m Twesha Karnani, a 19-year-old law student from Hyderabad, India. I would like to call myself a perfectionist and would rather spend my nights at home in my PJs than outside.

 DIAGNOSIS

My struggle with my health started in 2017. My first diagnosis was Idiopathic Intracranial Hypertension (IIH). I used to have severe headaches and doubled vision. This problem of IIH was sorted out after a lumbar puncture and medications. Things went well for about a year until the severe headache started again. This time, in May 2019, I was diagnosed with optic neuritis when I lost vision in my left eye. I was immediately put on prednisolone. My vision was back and all looked good. But I was wrong. When things were going well, and I thought I have my life back on track and I could start afresh since I started law school in July 2019. I was hit by the worst possible thing which could ever happen.

My condition started to deteriorate, again. Words can’t describe the pain I was in. It is like when the pain gets so severe that you stop feeling anything and don’t respond to anyone. We decided to change doctors. I was then finally, diagnosed with MOG Encephalitis (Autoimmune Encephalitis).

 LIFE CHANGE

I feel that more than the autoimmune illness affecting my life, it is the medication (prednisone) which has made it worse. I have been on prednisone for almost a year now. Its side-effects are appalling. It has affected me both mentally and physically. It has caused mood swings, weight gain, etc.

Initially, this illness made it very difficult for me to perform basic tasks like walking, bathing, and my ability to think. However, I am glad that now I can do things everyone does while being in a lot of pain.

 HEALING

One of my main struggles was the ability to think. I had planned on dropping out of college when my health deteriorated significantly. But I was told that continuing college is going to be therapeutic for me. I would be constantly thinking. I didn’t have to score perfect grades. I just had to keep myself distracted by doing something.

Hence, distracting myself has helped in the healing process (of course, apart from the meds and usual stuff)

 STRUGGLE

I do over-burden myself sometimes. Even on days when I’m not well and I’m advised to rest, I force myself to do things. I also feel guilty for having fun because I feel that I’m sick and I don’t deserve all this.
I also have days when I have severe body pain and headaches.

INSPIRATION

“I’ll rise up, in spite of the ache” – It’s from a song named “Rise Up”, by Andra Day
“Storms don’t last forever”
“I won’t stress about things I can’t control”

These have made me realize that I am more than this illness and that this too shall pass. This is just going to make me stronger. I have learned a lot from it and I shouldn’t forget that.

Find Twesha | @twesha_k