The touching story of Namutebi Ruth Elizabeth who has battled HIV all her life
Ruth once swallowed 90 tabs in a suicide attempt after she was stigmatized by fellow students
Madam Architect as she is referred at times has been denied scholarship because of her HIV status
Her name is Ruth Elizabeth Namutebi born on 4th January 1992. The 28-year-old is a Ugandan who has lived with HIV all her life.
Namutebi has faced toughest times but all is not lost as she continues to shine in her work as she battles the deadly disease. Below is her full story;
Life Without a mother
My mum often started falling sick when I was in my kindergarten. During those days, mum had started losing her eye sight and sometimes she would not go to work. At the age of 7 in 1999, I was admitted to Shimoni Demonstration School for my P.1 where I studied till P.5. On my first day at school, I clearly remember mum and dad walking me into the school gate and kissing me goodbye.
But before that year could end, mum was in and out of hospital. One day while dad had come to pick me up, two of my aunties passed by in a car and in the back sit was mum who by the way was breathing heavily and in pain, they were rushing her to hospital and dad was taking me home. To cut the long story short, the last time I saw mum was when she had feeding tubes up her throat and on oxygen support, little did I know that she was slowly by slowly losing her life. She had partially lost her eye sight and memory that she couldn’t differentiate between me and my sister. On 8th October 1999, she passed away.
After the burial, life became painful and hard that there were days dad had to walk a distance to pick me up from school and drop me at the taxi stage to board and head home, some days he couldn’t afford my transport fare that he had to place me on the taxi’s engine (akameeme), sit in the back seat of the taxi then get out as soon as it was about to fill up and set off. On various occasions, I was kicked out of the taxi only for passengers to plead with the conductor on my behalf.
My aunt, his sister took us up, I and my sister started staying with her and we became her responsibility completely.
We began staying with her from when I was in primary five (2003) to when I was in senior six (2012). At Shimon Demonstration School in my P.5 were days when we packed rice and meat for lunch only for lunchtime to arrive and it’s gone bad there was no option but to eat it.
In P.6 & P.7 (2004-2005) I started TB treatment, I was in boarding at St. Josephs’ Girls Primary School-Nsambya, life was so harsh, we were rarely visited, and we struggled to keep our stomachs full. There were days when all we had for breakfast was a bowl of black tea and had to wait until lunch to have an actual meal. Growing up and studying in this school, I always admired pupils whose parents could afford to buy them boxes of milk, biscuits, and juice.
There were also days when I would stand next to the school gate hoping that someone from home would visit us but all in vain and on growing up I realized that it was perhaps because dad was bedridden and all finances were directed to him, so we were rarely visited. It was a painful process but we finally managed to overcome it. I remember one time being given 5000 Ugandan Shillings ($1.35) for the three of us (my sister & cousin) to feed us as the term goes by. I cursed losing my mum and wished she was alive to take care of us. I hated boarding school, I just couldn’t wait to get home. My aunt’s job covered all my medical bills through insurance which lasted till 2010.
Secondary School Life
Eventually I got a second grade (16) aggregates in PLE and joined St. Lawrence Secondary School-Namugongo Ssonde in 2006 at the age of 13 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 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.
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.
At the age of 14, 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 pretended 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, I waited but all in vain. I had no option but to walk through this alone.
Tough Times And Turning Point
Months passed by and I was still going through this immense depression until I realised that everything I was going through wouldn’t matter several years later. I asked 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.
In 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 the age of 18 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 20 years 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.
Rehema and Zuria are my OG’s from Kakungulu Memorial School in Kibuli, we sat in the same class doing PEM/Ent, slept in the same dormitory and always ate from the same plate during lunch and supper. Throughout we lacked a lot.
I always reported to school with a school bank slip, 1/2 kilo of sugar, quarter bar of washing soap, buns and sanitary pads hoping that they would compensate for what I didn’t carry to school & the reverse was true, for obvious reasons we had access to each other’s suitcases. We had dry spells where we all lacked in that the only option was for me to go home (since I was half day & boarding) then return with cooked food. Times were harsh.
Zuria was in charge of keeping pocket money since me and Rehema hated visiting the canteen and its chaos. On days I fell sick, Rehema offered to bath me, sometimes even dress me up. Zuria on the other hand would help me lay my bed or iron my uniforms. When depression hit me, Rehema was my listening ear, she watched me cry myself to sleep through so much pain. 9 years down the road and we still connecting with each other.
Senior Six Vacation
Eventually after all this, i sat my senior six final exams in 2012 and failed, I got 12 points which wouldn’t qualify me for a bachelor’s degree in architecture in any Ugandan university. During vacation, I worked with National Water and Sewerage Corporation (NWSC) where I trained in the water laboratory, during those six months I worked and trained closely with various types of engineers which motivated me even more to follow my dream of architecture.
Unfortunately during the 5th month of training, I developed serious ulcers and got admitted in Kibuli hospital where I spent a couple of weeks. A medical test called Endoscopy was run on me only to discover that I had developed wounds/sores from my esophagus to the intestines. Alongside that, my CD4 count had dropped to as low as 5 due to the fact that I wasn’t adhering to my ARVs. I could barely stand up straight, bath myself, swallow solid food or medicine nor drink, that the doctors suggested inserting feeding tubes through my throat. I felt a sharp pain all the way through to my backbone.
I developed a skin rash and lost significant weight. I had to wear long sleeved blouses for whenever a guest visited.
One day relative visited, only for them to break down into tears on seeing me. For some reason my medical condition got my family together in a snap of a finger. Suddenly everyone cared. No sooner had I started healing than I begun stressing about school, UACE results were released and all I wanted was to be admitted into a public university which didn’t happen due to low cut off points. I became very desperate amidst which pressure rose. I tried pulling connections to get admitted into other universities but my efforts went to waste. On seeking guidance from people around me, I was being advised to study anything after all life was about making money, at the back of mind I knew this mentality is wrong. No one really understood my dream however a few understood what architecture meant.
Then suddenly one day I recalled a gentleman “Ssemusu Ananias” who was hosted at school to give us career guidance, I had taken his business card and kept it like an accolade, it’s as though I knew I would need him someday.
So I scheduled an appointment with him. In his office while we chatted I was at the verge of breaking down when he suggested that I rebound senior six which I didn’t want to do since I had already repeated senior five. He also alternatively suggested that I apply for a Diploma in Architecture at one of the Uganda Technical Colleges, my task was to convince my Father to agree to this arrangement since these Technical Colleges are located in districts miles away from home, so when he agreed I used some of my savings from a job I had with NWSC to cater for my very first 4hour road trip to Bushenyi (UTC-Kahaya). On arrival the lady at the reception said she couldn’t give me the course (architecture) I wanted but rather could offer me Water Engineering due to my low grades. To which I agreed because she said I could upgrade from that to either civil or architecture. At this point I was now even more desperate and had begun settling for less. So I embarked on my journey to Kampala after paying and registering for the next intake but on private scholarship.
Scholarship for a Diploma in Architecture
Weeks later, an OB from Kakungulu Memorial School called me and told me about the Ministry of Education and Sports advertising National Diploma Scholarships in technical courses of which architecture happened to be one of them to which I gladly applied and succeeded, during those days Uganda Technical College – Kyema located in Masindi had just opened up so there was high demand for applicants.
September 2013, I was admitted into UTC-Kyema on a government scholarship exclusive of functional fees, but because Dad wasn’t financially stable enough to do so, I offered to pay for 50% of it and he cleared the rest. I have never been this happy my entire life. Knowing that I had finally succeeded. On the bus to Masindi, I cried out of fear of leaving home to go too far away to a place I have never heard of or been to. But on arrival, I was so happy and overwhelmed. It was a huge chuck of land located fifteen minutes from Masindi town on which a few structures existed with the rest of the compound being bushy and green. The students were as friendly as they could get amidst tribalism. After a few months of getting to know each other, news of my status begun spreading something I didn’t expect but later I realized that it was because of the terrible skin rash and scars I developed while I was admitted for gastric ulcers and low CD4 count.
The whole campus was talking not only about my status but also my terribly looking skin. That one day while doing laundry a fellow student asked me to do something about my skin. Little did I know that everyone was talking.
There was this gentleman who was a year ahead of me and wanted me to date him but I turned him down after realizing that a relationship with him would require me disclosing my status to him, something I wasn’t willing to do since I anticipated rejection and I knew I couldn’t trust him to keep it a secret.
That aside there was this fellow student who made it his business to walk up to anyone who tried becoming friends with me to stay away from me, that I would infect them yet most of these guys truly just wanted to become friends with me.
Later on I got to find out that some of the friends I made during campus only came into my life simply because they had several other students say that “I would never make it in life because of my status”, hence felt the need to make me feel loved.
Nevertheless, these circumstances didn’t stop me from becoming academically strong. At campus I was known for studying long winters, I would always stay up with friends to read, I was also known for being good at AutoCAD (engineering software). I was so determined to defeat failure in that when first semester holidays came, I stressed my father to buy me a laptop so I could be ahead of all students when it came to any architecture software. There came a time when my world started to crash, I begun to feel unwanted, unloved by fellow students. There was too much name calling and finger pointing so I decided to overdose on 90 pills in the name of suicide, thereafter I was rushed to hospital and on making it out alive, I stopped sleeping in the girl’s hostel and moved into the boy’s wing. For close to a year, I shared a bed with a male friend who watched me cry myself to sleep every night. No matter how much he asked questions,
I couldn’t risk opening up to him in fear of the past reoccurring. Fast forward I graduated with a second class upper.
Life After Campus
In June 2015 campus ended, then internship officially begun. For one year, I interned with two architectural firms and no sooner had admissions to public universities opened than I applied to Makerere and Kyambogo, for close to 4 years, I always applied on private and government scholarship to both universities and still wasn’t admitted on grounds that my cut-off points were low. So I decided to try Uganda Martyrs University Nkozi, however upon admission I discovered that the course wasn’t exactly Architecture but rather a sister-course to Architecture plus their fees were about 4million per semester. At the time, a relative had promised to pay for my tuition but thereafter changed their mind and neither could I afford it.
I kicked off my scholarship hunt from 2017-2019 as soon as my cousin got herself one, so I figured I could walk down the same path, she connected me to the company that helped her get it. However, this was costly yet at the time I had no stable job, so I borrowed 1million to cover the expenses alongside the International English Language Test (IELTS) which I had to seat.
Having gone through the scholarship process, I discovered that I could easily get an academic scholarship into any European country without discrimination based on my HIV status however I wouldn’t afford the cost of living and application fees if I was to be admitted and that’s how I ended up opting for scholarships in Asian countries whose cost of living was fair plus the university application fees were friendly though known for HIV discrimination, for close to a year I kept trying to apply but still didn’t get through. First we would share my academic results with the university administration to which I intended to apply, and on various occasions the administration would accept them, then we would ask them if they would admit someone who is HIV positive and of course the answer was always NO. This went on for quite a while until I decided to put it on hold. There is a saying “when the plan fails, don’t change the dream but rather the plan”.
In 2019, I met a client who became a very close friend, he offered to pay for my trip to the University of Nairobi in Kenya so as to apply for admission into the university which I successfully got, Upon receiving an admission letter, the tuition fees were $2000 per semester for six years which I still couldn’t afford. Having come this far, I wasn’t ready to give up so I began writing letters to all prominent persons, I wrote a letter to the Rtn Hon. Speaker of Parliament Rebecca Kadaga, the first lady Janet Kataaha Museveni, Mrs. Winnie Byanyima, Hon. Nakiwala Kiyingi, Former USA President Barrack Obama, Rotary International President and many more unknown individuals with hope that they would offer me a scholarship but sadly I got regret as response. I was so desperate and broke at the same time, meanwhile I couldn’t even afford my own transport to drop off those letters later on print them out. I always counted on my friends to help print out the letters for me for free. Financially it was a dry season, no projects were coming in. Also around the same time, I had begun doing HIV advocacy on various platforms, that’s when I decided to use my voice to speak about my situation of having been denied scholarships based on my status. Along the way my story featured in various newspapers plus media stations hence so many people came out to help but still haven’t fulfilled.
You can help Elizabeth achieve her dream by sponsoring her for the architecture Degree, contact her on +256 750 707551