Immunosupressants are not the most pleasant drugs. They might be more viable and less harmful than steroids but their dire consequences on the human body elevates chances of contracting infections.
My NMO treatment is based on slowly increasing the immunosupressants so that steroids can be tapered. I already feel more vulnerable and have suffered from multiple throat and stomach infections within the span of a few weeks. Returning to the London- the international infection hub- I knew that I needed to develop a means to try avoiding these sudden and constant outburts. The answer to this question haunted me for a long time.
The answer for doctors is very simple. 'Just wear a mask when you are amongst people', they say. However, wearing a mask everywhere has not been easy for me.
Most people bombard me with questions that I often dislike answering and comments that don't really help. 'Why do you wear that?', 'Is your condition that bad?' and 'You look scary and horrible.' As much as I appreciate people being brutally honest or showing curiousity in mu condition, I am disturbed by the society's lack of understanding for those who unwillingly experience life differently from the norm.
More often I have been told, 'Take that off, stop being a coward' and 'you are acting like such a girl'. It is hard to explain to these people. I don't look for their sympathy and honestly I don't need it. I just wish that people could look past the mask, acknowledge another person's trouble and then just treat that person normally. Neither ridicule nor sympathy help.
Initially I used to hide my mask in front of friends and extended family members. I did not want them to see me differently or ask me questions that I had no answers to. I knew they would not understand. When I began wearing it infront of them, many of them laughed and thought I was too paranoid.. Others gave me an uncalled for sympathetic look like my life was already over. I felt a little bothered everytime this happened. However, I needed to continue wearing what kept me away from infections. I learned to ignore the snarky comments and the pitiful looks.
No one likes to wear a thick piece of cloth which results in a sweaty face and hazy glasses. A person like me does not like to hide his face or expressions from the world. I feel that people like me who have to wear it should not be seen as mental or distrubed. They are just fighting to stabalise their life which others understably but unfortunately can not understand.