Manali S. - Diagnosed at age 60

Hi, on June 23, red colour rashes appeared on my neck. The dermatologist checked to find lot of pigmentation behind the neck and also on face. She asked me to do the ANA test, had zero knowledge, never heard. This was the first time in my life, when the test was strongly positive.

She explained it's an autoimmune disorder.

I didn't understand, googled it, and had further tests. Finally revealed in the 1st week of August, I have lupus and sensitivity to sunlight. Indian climate has sunshine throughout the year.

Also told there is no medicine as of yet. All my years had planned, after sixty, will travel, go for holidays, enjoy life.

Doctors were surprised. This was not the age bracket to get lupus. 

Anyways, my life went to hell.

Now the important part is that though it’s affecting my skin, a rheumatologist will treat it. Because it also affects the joints. The Rheumatologist has no knowledge about skincare. She directs me to the dermatologist, who asks me to apply only sunscreen, because there is nothing else, she is aware of.

The skin on my neck has turned black, too much pigmentation all over the face. I am holed up the entire day till late evening at home, curtains drawn up. In case I have to step out, I wear a heavy veil covering up till the neck, sunglasses worn in a car.

Hairline has receded and become thin. 

I led an active life, volunteering in an NGO, teaching kids. Everything has become still. All I do is cook for myself, watch TV, pray, hoping for a miracle, as there is no one at home.

Walking on the street, in spite of being covered, affects my digestive system, ending in vomiting and loose motions. 

I'm looking forward to that day when I will be relieved from this.

Life is just not worth living.

Hope no one is affected by sunlight, which has taken away the sunshine from my life.