“I am a mother of four healthy boys, HIV positive and in a discordant relationship.”
This is the beginning of Jacqueline Wambui’s story having tested positive in 2004 after six months of self diagnosis .
“It started off as what I sometimes refer to as the constant cold because I always seemed to have a cold or at least similar symptoms. Certainly my friends at the time used to ask me ‘How is it that you are always unwell’.
Then, once I started experiencing fever and chills, it was concluded that perhaps it could be malaria Those were the days you could get anti-malarials over the counter at the nearest pharmacy whether or not you had done a malaria test and I hadn’t.
You know, that period of time that if you walked into a pharmacy and described your symptoms they would probably give you some drugs that would more often that not be a dose of anti-malarials ‘just in case’,” Jacque chuckles then pauses and stares pensively into the distance before continuing.
Malaria, tonsilitis and numerous antibiotics
“After anti-malarials, there was a period of vomiting which was followed in quick succession with diarrhea. Perhaps it was the anti-malarials that caused the nausea and vomiting because as anyone who has taken anti-malarials will tell you, they often don’t go down so well…especially if you don’t have malaria. All the same, I had a new diagnosis, severe tonsillitis as I could barely swallow. I was treated for the same.
Every part of my body hurt and I was very weak. But no, we didn’t have a diagnosis. And of course, I was taking the usual painkillers.
Within that six-month period, I had gone through several drugs – all procured over the counter. Now that I look back at it, I could have easily started my own clinic with all those drugs!
But each time, I was told that this will certainly help and for some they did, until they didn’t.
Eventually a friend of mine who happened to be a pharmacist, referred me to a doctor at a private clinic. And here began the next few weeks of consultations and pharmacy visits, only this time I had a prescription.
No HIV testing, thank you
!
It was the nurses who upon seeing that I wasn’t making any improvement, recommended that I should do a HIV test.
I respectfully declined.
In my mind there was no way I could have contracted HIV. Absolutely no way and I told the nurses as much.
A few days later, I went in for the HIV test. I was going to prove them wrong or so I told myself.
When the truth was that I had run out of options, it was either HIV or I had some form of cancer that simply alternated between different body systems.
And believe it or not, my money was on the latter even if it meant I would be the first case of the ‘system-hopping-cancer’.
I was thirty–two years old with three children and there was no way I had HIV.
In those days, the test was actually administered at a doctor’s office and you had to wait for the results.
Unlike the current situation where you can simply walk into a voluntary counseling and testing centre, have the test done and you have the result within minutes- in fact you get to read your own results.
I actually fell asleep while waiting for the results, not so much because of the waiting time, but I was simply exhausted as it had been months of hoping from one misdiagnosis to the next.
Broken
When the doctor woke me up, he began by telling me how it had been a wise decision to come for the test. And I automatically asked what was the next test they were going to run as I assumed that the test had come back negative.
I remember the doctor taking a few moments and I am sure he said something comforting, but the only word I heard was positive.
Everything else from that point is a blur.
I don’t remember my response, if there was any or what the doctor said thereafter. I don’t even remember leaving the clinic. I only remember the moment my bedroom door closed behind me and I dropped to my knees in tears. I was shattered. I was broken.”
Jacque takes a few moments and as if speaking to herself, repeats in a dull monotone, “I was broken.”
She takes a deep breath before going on.
“It wasn’t easy. It wasn’t easy at all. I know many people talk of the stigma especially during that time period; despite anti-retrovirals being available, people at the time still considered HIV a death sentence and the myths and myth tellers –though not as brazen as they had been in the 90s- were still present.
But what many don’t mention and what turned out to be the biggest challenge was the internal conflict.
There was no way I was HIV positive, yet…I was HIV positive.
I was a single mother of three and I was HIV positive. How did I get here?
I had heard about HIV but it never occurred to me in those six months, right till the doctor showed me the results, that I could be positive.
You know those five stages of grief: denial, anger, bargaining, depression and acceptance. Well I was stuck at one stage, denial, for quite some time.
A simple plan
In the interim, I had actually been to the comprehensive care clinic where I was to get my CD4 count and would be able to plan for management.
My CD4 count was at 294, which essentially meant that I was prone to a host of other opportunistic infections from TB and herpes to invasive cervical cancer.
And as any person in denial would do, I declined to start the anti-retroviral treatment.
My plan was simple; I would eat right and do everything I could do to boost my immunity. After all weren’t CD4 cells part of the immune system? That’s what I needed to focus on. I had heard the talk around town on the severe side effects that anti-retrovirals caused. I was not going to deal with that.
I was going to deal with HIV and my plan was not only very straightforward, but it also didn’t have any side effects.
Then came the period of anger; I was angry that my simple plan wasn’t working.
Bargaining and depression seemed to occur on alternate days or hours at times. One minute, I would be asking God to deliver me or at the very least he should enable my, once again, very simple plan to work. The next minute, I was crying because I knew both were futile causes and that I was HIV positive and would be positive when I woke up the next morning.
Acceptance
Finally. Yes, I was HIV positive but I was concerned. I had done my research and read numerous articles on HIV, as no longer was I going to rely on the fabulists.
I knew that one of the greatest challenges that most HIV patients face was adherence.
And I was not going to be an exception especially considering that I had in my younger days, found it a challenge to remember to take the contraceptive pill.
But I was willing to try and certainly I had to start the regimen.
It was a struggle and in 2006, I started losing weight drastically.
And once again, I was moving from facility to facility as they tried to figure out what was wrong.
I had extra pulmonary TB, weighed 35 kilograms and had a CD4 count of 94 which according to the WHO classification, meant I was now in stage four, the final stage.
I was immediately put on anti-TB drugs, more pills for me to remember to take.
And I was restarted on anti-retrovirals after two months of being on TB treatment; I was now on the continuation phase.
There was a period of being moved from one regimen to another.
I suffered bouts of typhoid and pneumonia in between that was before my immunity finally picked up. I have not fallen ill since I started treatment- and actually adhered to it.
People often tell me that I look ‘normal’ which is their way of saying that I don’t look ‘sick’ as that’s what they imagine is the ‘look of a HIV patient’.
Surprisingly that to me represents progress.
We are no longer in the days that HIV patients were malnourished with mouth sores and often bedridden, just waiting to die.
HIV is no longer a death sentence.