Voices Of The People Living With HIV And AIDS
If you’re infected by this debilitating disease, would you choose death over life?
These 3 people living with HIV and AIDS tell us how AIDS have changed their lives.
Camelia, 32 years old, transgender, used to be a sex worker, diagnosed in 1999
Camelia talks about how this disease had made her strong and inspired her to lend her strength to those in need.
1. Was it a difficult decision for you to come out and seek for help?
What was difficult for me at first, was accepting the news. But you can’t go back and change the past. As for seeking help, no, I didn’t think twice about it, because I know I needed help and support.
2. Do you feel discriminated?
For me, discrimination has always been there. First of all, I’m a transgender. Now, I’m a person living with HIV and AIDS. So the level of discrimination towards people like me can be very high. It affects me both mentally and psychologically. It’s the same at the workplace too. There are also no laws to protect the rights of people living with HIV and AIDS.
On the other hand, we, the people living with HIV and AIDS tend to isolate ourselves as well, especially from our own family members, for fear of being talked about by others. We don’t want our family members to be discriminated because of us.
3. How do you keep yourself so optimistic about life?
For me, I want to prove to the rest of the world that I am strong. I won’t let discriminations deter me from what I want to achieve in life. The fact that I’m still here, shows that God is giving me a second chance to live. Therefore, I want to live life to the full and to take good care of my health and my well-being.
I also take this chance to to inspire others to stand up, speak out and inspire others to fight this disease. By learning to bring purpose in your life, you not only help yourself live positively, but also give a voice to those in need. We must learn to set a good example to the rest.
4. Being a transgender living with HIV/AIDS, do you ever feel discriminated when it comes to getting help and treatments from hospitals?
The people in the health care industry are doing a great job. They have been very co-operative in offering help and giving us proper treatments. Everyone is treated equally no matter what your background is.
5. Is there a message you’d like to tell the rest of the people living with HIV and AIDS?
Continue to fight. Be strong and do not ever give up. Find a support group that you’re most comfortable with. Give your fellow friends the support they need and get support from others too.
6. What would you like the rest of the society to know?
Stopping discrimination is easier said than done. However, what I’d like to say is, do not punish us. As humans, we are all the same and we deserve to be treated with respect and dignity. Just ask yourself this question, if you were one of us, how would you feel being punished and being treated unequally?
Howard, 51 years old, unemployed, diagnosed in 1995
When Howard was diagnosed, stigma and discrimination was at its worst. Everyone treated him like a social outcast. His friends avoided him. He even had to move out from his own home.
1. How did your friends and family members take it upon knowing your diagnosis?
None of them could accept it. I am not allowed to be anywhere near them. I had to move out. My friends who used to hang out with me left me completely. At this point of time, I felt discriminated. Everyone avoided me like a plague. But now, I am used to being perceived as who I am. It doesn’t bother me as much as before.
2. Are your family members still avoiding you now?
Only some of them. Education and knowledge did help to a certain level. Now that they understand the disease better, the acceptance level has improved. My brother comes here (shelter home) to visit me once in awhile and helps wherever he can. However, some relatives still treat me the same. One of them even told my family that if I were to go home, she will leave the house. And because of this, I have to keep myself separated from my own parents, as she is the one taking care of my parents at the moment.
During Christmas, I would be separated from the rest during dinner. My meals are passed down through the kitchen door. And when everything is over, my plates and utensils are kept away from the rest.
3. Who is helping you out financially?
I rely on my own savings. The founder of this home is also helping me a lot in terms of help and support.
4. Has this treatment improved your health?
Yes, it has helped me in many ways. When I came here, I was paralyzed. I came here using a walking stick. Now, I can cook and even do little household chores. I have been on this medication for 7 years.
5. What message would you like to tell the rest of the society and the people living with HIV and AIDS?
Please stop the stigma and discrimination. We are humans too. We deserve to be treated equally.
To those of you who are living with HIV/AIDS, continue to fight on, and be strong. Face the world with confidence. Let not obstacles stop you from achieving your dreams. Most importantly, get yourself proper care and treatments.
Michelle, 37 years old, diagnosed in June 2001
Not everyone faces harsh discrimination from the society. Michelle, one of the lucky few, has been able to get strong support from her family and her health care professionals. She tells us how this disease has taught her to value life.
1. How did your friends and family members take it? Are you getting any support/help from anyone? Who?
Initially, I did not tell anybody except my immediate family members as I needed support (emotional, mental and physical) from them. Also my family means the world to me, so I wanted them to be a part of this journey in my life. Of course, my parents were shocked, but everybody was united to find out more about HIV/AIDS.
2. Do you feel discriminated?
I’ve been relatively lucky, because I have the strong support of my family as well as my health care professionals, who are all fiercely loyal and protective of me. Most discrimination occurs when your confidentiality is broken, when someone spreads news of your status to everybody else without your consent. It is not their piece of information to begin with.
3. Has the level of discrimination and stigma changed throughout the years? How so?
Perhaps. I have heard of horror stories from fellow people living with HIV and AIDS – parents kicking them out of the homes, colleagues not wanting to share lockers and cubicles, friends not wanting to share mobile phones, etc.
It may seem as if outward discrimination and stigma has lessened, but the underlying fear and ignorance is still there. How else to explain the reason people are still afraid to go to the hospital for treatments, or the reasons there are still increasing numbers of people getting infected? How to account for the people living with HIV and AIDS who have been retrenched, or people living with HIV and AIDS being advised against marrying, or the lack of laws to protect people living with HIV and AIDS?
4. What are the challenges you’re facing? What’s the greatest challenge?
To look after myself the best I can. To ensure that I do all that I can to optimize my health. To allow myself to start planning for the future and have dreams.
5. How has HIV/AIDS changed your perception in life?
HIV/AIDS has definitely made positive changes in my life. I have come to learn not to sweat over the small things in life. And that the only things important are your health, family and loved ones.
6. What message would you like to say to the people living with HIV and AIDS, and to the rest of the society?
For fellow people living with HIV and AIDS: a HIV+ status does not mean that you are compelled to let everyone know of your status. Confide only in those who can provide you with care and support. Also, get all the information about support groups. Treatment is available, and it is no longer an impossible dream to think long term.
For the rest of society: Instead of putting us in our place, how about imagining what’s it like to walk in our shoes? HIV/AIDS is a behavioral, social issue. It’s about high risk behaviors and not high risk groups. The only difference between me and you is that you are now armed with the knowledge to protect yourself.
Putting Rights into Practice: Preventing HIV/AIDS
…it is beyond doubt that a human rights based response, which empowers our whole community to avoid infection, and which treats those with HIV with respect and inclusion and aims to properly manage their health, is significantly more effective in reducing the spread of HIV than a response of silence, discrimination or exclusion.
Declaration of Rights for people living with HIV and AIDS