Magara Darious the Managing Editor of Eastafricanwatch.net had a Q&A interview with Namutebi Ruth Elizabeth an HIV positive living lady. She speaks her story of how she has suffered from stigmatization as a result of disclosing her HIV status. Her photos are bellow and with clients and work
Namutebi Ruth Elizabeth is a 28year old full-time free-lancing architectural drafts woman with five years’ experience having attained a diploma in architecture at the Uganda Technical College Kyema in Masindi and has worked with seven reputable companies making her capable of structural designs, hands-on drafting, site investigations and supervisions.
As a seasoned draftswoman, she is also a motivational speaker and HIV/AIDS advocate driven by the need and desire to help people living with HIV/AIDS under a non-profit organization she founded called DARIA KAYITESI SAFE SPACE having been born HIV positive and endured stigma.
Ruth is also a graduate mentee of a six (6) months mentorship class program (TMC) and currently she volunteers with Reach a Hand Uganda as a Peer Educator to spread the sexual reproductive health and rights information (SRHR)
- b) HOW OLD ARE YOU?
Ruth is a 28-year-old Ugandan.
- c) WHERE WERE YOU BORN?
I was born in Makindye Division, Kampala at St Francis Hospital Nsambya
- d) BORN TO WHO?
My family doesn’t want to be part of my disclosure story, they want their privacy respected
- e) WHAT WERE THE CIRCUMSTANCES IN WHICH YOU WERE BORN?
I was born to a nuclear family of three; my father, mother and sister. My father and sister are alive unlike my mother. Growing up I was always in and out of hospital for one illness or another. And as soon as my mother died , we were eventually
raised by my Aunt (sister to my father) who provided for everything we needed. From
medical bills, accommodation to school fees. I thank her for that support.
- f) WHO ARE YOUR PARENTS AND A BRIEF ABOUT YOUR FAMILY AND SIBLINGS?
My family doesn’t want to be part of my disclosure story, they want their privacy
WHEN DID YOU DISCOVER YOUR HIV STATUS?
I joined St. Lawrence Secondary School-Namugongo Ssonde in 2006 at the age of
13yrs for my S.1 where I began swallowing septrin based on doctor’s instructions. I remember the school nurse always asking me why I was swallowing septrin each time I went to swallow it, it was school protocol to keep drugs with the nurse. After a while my body outgrew the septrin and I started falling sick constantly and terribly that one day I went straight from school to IMC-Kitgum road on drip, S.1 third term ended and we got holidays.
News of my status was broken to me by my Aunt during that holiday, that night it didn’t really affect my emotions then I began ARVs thereafter I missed out on first term of senior two because they were afraid of the side effects fortunately nothing happened. So I resumed studies at a new school nearby home called Muyenga High School for second term S.2 in 2007 and was academically behind meanwhile I was in and out of hospital for various illnesses.
- h) HOW DID IT FEEL?
The reality of being born HIV positive hadn’t really suck in until I begun giving it thought. I realized that it wasn’t my fault and begun blaming my deceased mother. I had so many questions and no one to answer them, I was very bitter and hated everyone, became very lonely on the inside and wondered whether there was someone like me preferably an age mate I could connect with and talk to because to me no one would understand how I felt, I was depressed all the time and cried myself to sleep on a daily, I wondered whether I would ever be a mother, it was a very painful unexplainable feeling, it felt like I was ripped into pieces. I wished my mum had got a miscarriage or aborted me. I hated myself so much, I had no self-esteem whatsoever.
- i) HOW IS LIFE AS AN HIV POSITIVE LIVING PERSON (ANY CHALLENGES)
Living an HIV positive life no longer affects me like before, today I feel more comfortable in my own skin unlike the old days where I couldn’t even openly talk about it. I have mastered the art of taking care of myself and what I have to do to live a healthy life.
The only challenge I faced in 2017-2018 was when I was trying to apply for scholarships out of Africa and some countries weren’t receptive based on my HIV status. First we would share my academic results with the university administration and once they accepted them then the next question would be whether the embassy would accept my medicals.
- j) HOW HAVE YOU BEEN STIGMATIZED AND BY WHO?
At the age of 14yrs I was already mentally struggling with all this and because of that I began seeking acceptance, anyone I could open up to, share my pain and find consolation. I got a female classmate to whom I confided in but before the day could end she had told a friend and a friend had told a friend. And that’s how my days of stigma begun. I was the talk of the entire school with fellow students not only pointing fingers at me but also stigmatizing me, it was the loneliest place to be, isolation kicked in. I was very unhappy and sad. Making matters worse there was this biology teacher who each time he taught spoke about genetics and how HIV was one of the illnesses that are passed on genetically causing me discomfort. I hated his classes then begun dodging them. As a
matter of fact biology was my worst performed subject on my senior four result slip. I felt small in school and out of place, I remember wanting to be alone all the time because it felt like everyone didn’t like me or that they were just doing me a favor or they felt pity for me which led me to start missing school deliberately, dodge exams and pretend am sick just so I could stay home where my mind felt at peace. I desperately needed
someone, anyone old enough or a relative to talk to me about this enigma called HIV but
I waited in vain. I had no option but to walk through this alone.
Months passed by and I was still going through this immense depression until I released that everything I was going through wouldn’t matter several years later. I paused questions to myself, wondering if I gave up now and decided to quit then who would be there for my sister, I had to set an example for her, I was so extremely afraid of disappointing my family, I lived in fear of disappointing them. That’s when I realized that none of the students who were stigmatizing me at school would be there for me in the future in case I failed to make it. None of them would care if I made it in life or not. I asked myself, “would all this matter in years to come?”
So I learnt to fight for myself mentality, to pray and fast since this was a Christian school. I began to focus on books, I stopped hanging out with friends that weren’t adding value
to me then I directed all that energy to academics since our finals were also a year away.
The few friends I had noticed that I had distanced myself.
UNEB S.4 results I scored a second grade (35), with a dream of becoming an architect then opted for sciences in the same school for advanced certificate level. At 18yrs in
2010, I joined S.5 first term in the same school but then didn’t want to go back after all I
had been through. So I asked dad to change me to another but he refused. He didn’t understand why nor did he bother to ask me until his mother cared to ask, to which I had to lie about a fellow student seeing ARVs in my bag and spreading the news around. A piece of advice given to me by a counselor since I was afraid to tell the truth.
It felt good running away from my past when I changed schools but little did I know that running away from problems doesn’t solve them. I happily joined Kakungulu Memorial School-Kibuli in 2010 second term S.5. Adjusting to a new school was tough on me plus the fact that home was quite a distance away. I found walking that distance on a daily to and from very hectic, of which sometimes evening preps were compulsory for A’level students. I failed to catch up and had to repeat that class. Dad offered me an opportunity to change school and continue with S.6 but I turned it down because within me I knew I hadn’t grasped anything during my S.5 so I wouldn’t pass S.6, so I personally made the decision of rebounding S.5 in 2011, I hated the thought of it but there was only one way through the tunnel.
All was well in school, no stigma and depression but rather great academic improvement when hell broke lose all over again. I was back to square one after I met old students from my former school who made it a point to spread the news about my HIV status. Once again I lost my joy and happiness, my insecurities were back. I slid back into depression, loneliness and bitterness. I hated myself.
My academic concentration became even more distorted when my young sister who was
in her S.4 was admitted into hospital where recovery took a while but came through eventually. Once in a while I would leave home for hospital with a few books to study while I watch her, I disliked the idea of her staying alone. Meanwhile responsibility shifted unnoticeably to me when our Aunt left for a six months’ vacation leaving a relative in charge. Revising for my finals became hard, tears rolled down my cheeks each time I opened my books to read, I kept wondering whether my sister was really being taken good care of in my absentia. We survived off a monthly $100 which my other Aunt begun sending us after hearing about my young sister’s hospitalization.
We always budgeted for a few household needs. In the middle of all this I felt trapped
that I not only had to ask for permission from the senior lady at school to grant me access of being able to go home a few days in a week and spend the rest at school which made me become half a day and boarding student. I also illegally kept a small phone in my bra that way I could get updates on my sister who was discharged plus the wellbeing of
home. At 20yrs old I was not only responsible for home and my sister but terribly failing academically due to divided concentration. I remember entering mock exams straight from hospital without preparing for them.
Meanwhile students weren’t the only ones stigmatizing me so was the family of my boyfriend which didn’t accept me since my body was covered in scars, my physical appearance screamed HIV and little did they know that we had chosen to abstain. This was gentleman who was determined to be my boyfriend despite me willingly disclosing my status to him, he said his status was similar to mine though later found out it wasn’t when his mother pressured us to go for testing. Irrespective of his mother pressure to break up with me and the multiple students who kept telling him about my status, he made up his mind to stay with me. On various occasions I encountered harsh confrontations from her which his son never got to know about but eventually she succeeded when we broke up. To this day her son is a very close friend, the only person I know who tells me the bitter truth to my face when I don’t want to hear it. I couldn’t wait to see 2012 end, I lost track of time and just kept showing up for classes because it was a routine. I didn’t trust anyone to disclose my pain no matter how much I wanted to be helped and understood. I never ever wanted to show my weaknesses by shading a tear. I always broke down alone with no one to see or judge me. I considered suicide, quitting and giving up. I felt weak and desperate not only because of the break up but because of my sister’s situation, the stigma at school plus the responsibilities from home. I was tired of being amidst everything, for having to be the strong one who shouldn’t break down and show weakness, for not having someone to talk to about my emotions. How I wished I could run away from all this. I decided to sleep walk through every last moments at school, I ignored everyone and minded my own business and became sadder, depressed than ever. I felt locked up in four walls, days seemed longer than weeks. The few friends
I had started noticing my change in mood and constant disappearances. Around the same year 2011 to 2012, my aunt got laid off from her job which was catering for my medical insurance and that’s how I ran out of ARVs and didn’t know a hospital where I could get refills, so for close to a year I wasn’t on ARVs.
- k) ARE YOU MARRIED OR IN A RELATIONSHIP?
I am not married nor do I have kids, as a matter of fact I have been single for two years and I must say it’s the most boring place to be. However, this has been the most beneficial and fruitful time of my life since I have managed to accomplish a lot during this period. I have focused on achieving my goals and discovered myself to a larger extent.
- l) WHAT DO YOU THINK SHOULD BE DONE TO END/REDUCE STIGMA TO PEOPLE LIKE YOU?
Personally I don’t believe we can ever end the stigma towards HIV/AIDS but however we can continuously teach and spread information regarding its spread as a means of creating awareness.
And as for Non-Government organizations fighting HIV/AIDS, I suggest that we find
means of teaching people living with HIV/AIDS how to adopt and live in a stigma filled world.
The ministry of health should also provide more mental health institutions and services since this nation is faced with a high level of mentally impaired patients that are HIV related. This can be most effective if in every region an institute is built for purposes of making mental health services accessible.
- m) WHAT INTERVATION ARE YOU MAKING TO FIGHT HIV SPREAD IN UGANDA AND ON THE GLOBE? (WHAT COULD BE DONE TO STOP HIV SPREAD)
Daria Kayitesi Safe Space (DKSS) is a youth-led and youth-serving non-profit organization that I founded that came into existence after I was hit by the reality of challenges faced by people living with HIV/AIDS in all calibers.
We are a stigma-free society impacting a safe space that provides free better medical services and enforce ART drug adherence, rehabilitation, and psych-social support plus counselling services. The value that DKSS intends to add to the lives of these people living positively is skills training through economic & financial empowerment, SRHR knowledge, employment opportunities, and reduce HIV rated deaths, creation of support groups/ families, mentoring & coaching.
Beyond providing HIV/AIDS services, DKSS plans to accommodate some beneficiaries, skill and educate them as means of financial empowerment. We hope to offer
life skills like mentorship programs, motivational talks, academic and career guidance,
preach sexual reproductive health and rights information through training peer educators.
The target audience is exclusive to young adults aged 30yrs and below living with HIV/AIDS. The category of beneficiaries will include those who have been sexually harassed and abused, homeless (street/runaway kids), children from child headed families, orphaned/dumped children, school dropouts and those born with HIV.
However in the long run, DKSS intends to expand by taking on more complex situations such as the elderly aged 30yrs and above living with HIV, pregnant teenagers, people living with disabilities, prostitutes, drug addicts, and single parents especially mothers, & the mentally impaired.
- n) ANY MESSAGE TO THE READERS?
Everyone on planet earth deserves to be treated equally whether they are HIV positive or not. It doesn’t matter how they acquired the virus. Human nature should be about holding each other’s hand irrespective of the circumstances. We should never wait on anyone to disclose their status for us to throw a pity party better yet play the sympathy card. No one should be labelled based on their status because we don’t choose to become HIV positive.
- o) ANY MESSAGE TO THE YOUTH GLOBALLY?
To the young adults globally, stop making wild assumptions about your partners nor should we trust them enough when it comes to protecting ourselves. If it’s not ON then it’s not safe which means that the game is off.
- p) WHAT HELPED YOU TO THIS DISCLOSURE?
I took the decision to disclose my status after I was denied various academic scholarships outside Africa which affected me academically. Alongside that I decided to disclose because one of my close friends turned HIV positive yet I had already disclosed to him.