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Left alone

To suffer from a chronic disease is in itself quite terrible. What makes it worse is the way people react to it. Hepatitis patients like AIDS patients have to deal with a variety of negative reactions since fallacies related to the virus can alienate them from others, at times even their families.

“When people find out that someone has hepatitis B or C, the patient is often stigmatised, because people think the disease is contagious,” says Dr Saeed Hamid, professor and chairman, department of medicine, Aga Khan University Hospital, “It sometimes becomes very difficult to let others know that one is suffering from chronic hepatitis.”

Lack of awareness regarding the subject, coupled with the fear that the disease is either incurable or has a very low rate of cure, makes people paranoid and they go to any lengths to avoid catching it.

“But they don’t realise that this way they are hurting their loved ones a lot,” says Sabih, a hepatitis patient, with feeling, “I’ve stopped meeting people, because I can’t bear to see the look on their face when they find out that I have hepatitis. Maybe it’s me who’s paranoid, but now I just feel that they can’t wait to leave my company. Why don’t they realise that by sharing food, or sitting next to me, I will not infect them.”

In such cases, often it’s not just medical treatment that patients are looking for, but some sort of assurance and hope. Generally, families and friends are ill-equipped to help such patients emotionally, and often worsen the situation by their insensitive reaction in order to protect themselves.

“We counsel the families as well,” says Dr Hamid, “Families worry that the disease will spread and take them in its fold as well, so we guide them as to what are the real risk factors, and what are just erroneous beliefs.”

Fatima, on the other hand was extremely fortunate to have the support of her family as well as friends when she was diagnosed with hepatitis C. Interestingly, in her case, it was Fatima, who insisted on taking all precautionary measures, even unwilling to share her food with others in case they get infected.

“I would tell my friends to keep their distance, but they would only scoff at the idea, and make it a point to be with me so that I don’t feel alone. It’s thanks to my family and friends that I have never had to keep my illness under wraps. On the contrary, I now counsel people on the precautionary measures that one should adopt to avoid hepatitis.” More than anything else, one should always stay in a positive frame of mind, no matter how people react, and hope and pray for the best, says Fatima. —Sa’adia Reza