Losing a mother to some strange illness at the age of 7 can be devastating, but finding out later in life that the same illness that took your mother is in your blood and could claim your life is even more devastating. Knowing that a virus could hinder realizing all your dreams in the future is unthinkable.
For Ruth Namutebi, this has been a nightmare that she has learned to live through for 29 years now. She has been depressed, attempted suicide, she has learned to live the hard way but still has a dream she hopes to achieve someday. Her life story is so inspiring that listening to her left my heart bleeding for everyone that has lived such rough life.
The last memory of her mother as Namutebi tells me, was at Mulago hospital with her entire body wired and her eyes blind. “She could not see. I actually thought it was blindness that killed my mother because while at the hospital, she would call me my little sister’s name” Namutebi recalls. Not long after this, her mother passed and an auntie took over the role of bringing them up.
From a very tender age, Namutebi was in and out of the hospital, had a strange rash covering her body, and later suffered from Tuberculosis in Primary six. “All my life, I have been in and out of the hospital. It is only these last three years that I have been able to stay healthy” she tells me.
Her extended family came in handy when it came to deciding the schools she could attend. Namutebi was always in schools closer to home and IHK where she used to pick her medicine.
One day when Namutebi was 13, her auntie took her to a balcony of her unfinished house and broke the news that she had been born with HIV. “At that point, I did not understand what this meant so I moved on with my life. But later, it hit me that this was something serious. I watched on TV and read newspapers about it” she added.
While at school, Namutebi told her best friend the new discovery she had just learned about her life. She trusted that this friend would keep her secret but this wasn’t true. In no time, her secret had become public. Namutebi’s friend had opened her mouth and told the entire school about her status.
“This was the beginning of my problems. I was stigmatized, students started calling me names like the walking corpse. I hated my life and started dodging classes, my academic performance declined. I would lie at home that I was sick and not go to school so as to avoid being name called” she recalls.
She hated her life, slipped into depression, and wished her mother had not brought her into the world. She blamed her for everything that was happening at this point in life.
“I felt safe at home, no one was calling me names, and they knew my status and had no problems. So, I would leave school in the middle of the day and tell everyone home that I was sick. I was depressed but no one in the family believes in depression” she added.
Namutebi who is currently an Architectural Draftswoman and HIV activist tells me that she knew it wasn’t time for her to stop living. “I realized that you can only live for you, I had dreams to achieve and a sibling to take care of, in my family there is no room for failure, so I realized that with food in my mouth, a roof over my head and school fees paid, there was no excuse for me not to succeed,” she says.
Every moment of her life has been a lesson and inspiration to help others. During her secondary school, Namutebi’s sibling suffered from mental illness and had to be taken to Butabika at this time, she devoted her life to making sure that her little sister had all the help. Namutebi says that with help from some relatives living in the diaspora, she was taking care of the household. In turn, her academic grades declined.
“I revised my school calendar and spoke to the teacher who would allow me to study three days a week and spend the other time taking care of my family. I paid the bills, bought food, had to pick my medicine, and also visit my sister at butabika” she recalls.
This may seem too much for a teenage girl, but she knew her family needed her. At the end of S.6, Namutebi had not scored higher points as she had hoped and that meant that her dream of becoming an architect was over. But was it?
“I only managed to score 12 points at A’level and this was a failure to me because no university would admit me to study architecture my dream course. I was willing to repeat S.6 if that’s what it took for me to do this dream course. However, my mentor Mr Ananais Semusu advised me to apply for a government-sponsored diploma at an institute. I was able to be accepted to Uganda technical college in Masindi” she recalls.
It was here, that Ruth managed to study and graduate as an Architectural Draftswoman and she is doing such a great job. She however tells me that her job means she is an assistant to the registered architects though her dream is to do a Bachelors and be officially registered too.
While at the Institute in Masindi, another wave of stigma set in. She could not date a guy without everyone telling him to stay away from her. “There is this particular guy who went around the campus telling everyone to stay away from me if they did want me to kill them with the virus. My life was so miserable that at some point I took over 100 pills hoping to die. I stopped taking medication because I was so tired of the gossip. It was such a horrible experience” she says.
However, this did not stop Namutebi from finishing her course. Unfortunately, the dream to do a Bachelor’s degree in the same field has proven futile as for many years now she has tried to get a scholarship from a number of countries to study her dream course, only to be turned down due to her HIV status. She has applied to countries like India, China, Cyprus, Turkey, and Mauritius but nothing.
“I have been turned down for scholarships in many countries because of my status. I follow all protocol while applying, but at the end whenever my aunt and I would ask if someone of my status were allowed to study in these countries, we were told NO. Probably because they fear that not having insurance in those countries will leave me at risk of not receiving medication whenever I fall ill, plus the fear that I might spread the virus in these countries” Namutebi painfully says.
As she struggles to seek help from important persons in government and other world organizations, Namutebi has not put her dream of helping young people on hold. She is a peer educator with Reach a Hand Uganda and also goes to schools to speak to young people about the challenges of HIV, under an NGO she owns and one named after her late mother, Daria Kayitesi Safe Space.
She tells me that many students just like her back in the day, find it hard to regularly take their ARVs at school for fear of stigmatization. “Many of these young people especially in the boarding section do not get to swallow their medicine as prescribed. This is because they fear disclosing their HIV status to teachers who may end up discriminating against them. It will be hard to convince a teacher to open a dormitory for you in the middle of night preps so you can swallow medicine without you explaining what you are trying to cure” Namutebi says.
She also noted that these students do not get to eat a balanced diet as is supposed to be a case. They are subjected to the infamous posho and beans like their colleagues who do not have the virus and this affects them severely. Also, the morning and night preps are not so favorable for these students.
However, Namutebi says she always advises students to at least find one teacher and confide in them about their status as this could help them. As long as this teacher can keep their secret and help in whichever way possible, a student should not face a hard time.
Namutebi met and dated her first boyfriend in S.6. She says this was the first time in a long time she had felt genuinely loved by someone who knew her HIV status and was not a member of her family. She reveals that as a couple, they agreed to abstain from any sexual engagement. Namutebi had at this point changed schools, but students from her former O’level school came spreading the same words to the new school.
“I had my first boyfriend in senior six. They tried to tell him to dump me because I was HIV positive, but he already knew. We dated for one year and we were never sexually active. However, things went sideways as his mother did not approve of the relationship due to my status” she narrates.
Ruth has dated a few suitors and says she always discloses her status to them. She however says there is one that she did not tell about it but also did not engage in any unprotected sexual intercourse with him. She also recalls one guy she told about her status and he left immediately.
“There is this guy I told about my status and he was overwhelmed. He could not stand me, he couldn’t even kiss me. He just said, thank you for being a good person and telling me all this, but good luck and goodbye. But for all the other guys, none has overreacted about my status. I always ask them to come with me for an HIV test at the hospital so that I can know their status. Only one guy ever refused to come for the test” she says.
Namutebi also tells me that all the people she has gone testing with are always negative. At her stage now, Namutebi is not capable of spreading the virus because it has been suppressed thanks to the many years of her consistency in taking her medication. She tells me that now the virus is no longer in her blood, but just her organs.
She advises young people who are in the same predicament, to avoid revealing their status to everyone anyhow. She says one should first study the other party and learn their intentions as it hurts more to reveal your status to someone who will get you to fall in love with them but have selfish reasons for using you and later dumping you. Namutebi also advises young people who are below the age of 18 and are still in school to abstain until such a time when they are old enough to start dating or if you have a boyfriend at school, the both of you can agree to abstain.
According to Namutebi, most men cannot keep their mouths shut and there is a possibility of one announcing your status all over the village. She however says that ladies who plan not to reveal their status should also ensure to abstain. Because at a given point when your man finds out, they will hate you, and others may pick the virus elsewhere and blame you.
Namutebi believes she has inspired many people, especially those that are HIV negative. She says that many who are losing hope, look at her working towards her dream despite living positively with HIV for 28 years.
“I have inspired many people, there is no day I have woken up to my social media and I have not found messages of you inspire me, I want to be your friend. Most people who are coming into my life are not necessarily people who are HIV positive, but some are negative and struggling with life. They want to walk the journey I have walked and lived the kind of life I have lived” Namutebi tells me.
She advises married couples to accept each other’s statuses, especially where only one is HIV positive. She notes that running around looking for someone that is HIV negative is not a solution. Namutebi’s hope to get a scholarship and study her Bachelor’s Degree is still valid and she hopes that someday, God will answer her prayer.
While Namutebi says she is currently single, her dream is to get married and have children of her own.