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TB and HIV… Not me

Author: Rebecca Matheson

As of 2017 I had been living with HIV for 23 years. No surprises just chugging along, regular, routine viral load tests, take mediations, eat well, sleep well, work/life balance (almost) and life going on as normal. Or NOT!

In 2017 I started feeling very tired, you know, the kind of tired that you wake up with and go to bed with. I am used to feeling tired, sometimes we work long hours, travel a lot, working for a global network also means having meetings at all hours of the day and night and responding to women in different time-zones and my second job (the best job) being a mum to Tabitha. Like I said, I’m used to feeling tired, but this feeling was all consuming.

I changed my diet and worked harder at the gym, focusing on good food, rest and less stress where possible, none of this seemed to make a difference. So, I decided to find a good doctor in Nairobi and try not to panic that my HIV was not of control, or something worse (I always think of the worst possible scenario that way there are no surprises…right?)

After several blood tests, x-rays and long conversations with a GP and then a specialist I was diagnosed with TB……sent home with a bucket load of medication and told not to go to work and that the medication might cause some side effects but under NO circumstances was I to miss taking any tablets.

What? that was it, no support, no information, no hand holding and no reassurance from anyone that things were going to be okay. I won’t go into details but let’s just say this was not a great day, week, month! That diagnosis left me with a plethora of emotions. Denial, anger, frustration, most of all fear which was mostly caused by lack of information about TB, what the diagnosis meant for me, how having TB in the context of my HIV status would affect my life; If maybe any of the people around me were at risk of infection. Being far from my network of friends and family in Australia dint help my situation.

Four drugs for the next four months then two drugs for the remaining two, sounds so simple; I’m sure you have heard of the saying the ‘straw that broke the camel’s back’ well this was the last straw. I retreated to my warm dark bedroom and sank under the covers, well that’s not exactly true, I still had to cook, do school runs and regularly visit the bathroom to vomit at least twice a day, in between that I stayed resolutely under the bed covers and surrendered to the sleep goddess that never seemed to come for long enough, at that point endless sleep would have been my preferred option.

My son flew in from Australia to be with me, friends cooked and froze meals, neighbors took on the school run, the love of my life moved in to care for me and Tabitha (eesh… disclosure of HIV and TB that’s a whole other crazy story) and I slowly crawled out from under the covers but still days felt like months, my mind focused on the negatives and the side effects knocked the wind out of me.

More doctor’s visits, more tests and x-rays, refill of medication, allowed back to work……that’s a joke surely. I could barely crawl out of bed let alone go to work, soon but not yet.

TB is no joke and the treatment is not a walk in the park, especially if you live in middle or low-income countries like us, the new treatment with less side effects is either not available or very expensive.

Okay back to my TB.

I’ll be honest, I may have skipped a few doses of the treatment which I wouldn’t recommend anyone doing as even though the medicine is harsh, I now have the critical information about resistance to treatment if doses are missed. There is also the reality of compliance was a legal and ethical issue in Kenya, media reporting imprisonment for those who were not compliant with TB medication.

Knowing all that and facing the horrendous side effects just a few short hours after taking the pills was a delicate dance, one foot knowing and doing what was right and good for me in the long term and on the other foot.

I’m only human after all and had periods in which for a short time I skipped doses. Quick interventions from my family and friends who dramatically did a very serious intervention that involved threats of being reported to police and painting a very real picture of life for my children without me helped me a lot in getting back on track.

Six months is a long time, there is nothing good about TB and even less about the treatment. I did not know I was at risk of TB and luckily had access to doctors that knew to test me and start me on treatment early. There was no information about how to cope with the disease, how to tell others, what the real side effects of the treatment would be, how to cope with side effects and there was nowhere to go for support. It nearly sent me under, actually to be honest I was down and out and just about under, it was my family that empathized, joked, cajoled and finally threatened that got me through.

Many women and girls have no access to free medical testing and treatment in their local communities, no information about TB and absolutely no networks of support and very real stigma that is associated with TB that prevents talking about testing and diagnosis with family, friends and colleagues. Once on treatment for TB there are many barriers (many more than I faced) to adherence and without the supportive systems in place it can be slippery slope to eventual death.

This is a stark reality, we see young women dying from coinfections of TB/HIV in Kenya far too often and now I understand why. Although this is my story living with HIV and TB, this is the story of millions. Giving a diagnosis of TB and treatment is not enough, we need easy to understand information about the disease and what to expect from treatment, lessons on how to tell others, we need to know what our rights are and most importantly we need to be connected to each other, to share our stories and to give and receive support when needed.

One year after diagnosis (phew what a year) I am still rebuilding my strength, my confidence and thinking how lucky I am to have family and friends that knew when to step up when I couldn’t.

As a woman living with HIV and having survived TB I am provided a unique opportunity to speak up, to share my experience but more importantly tell my community, my government and global policy makers how to bridge the barriers to testing and treatment for TB and finally end TB.

It’s hard to believe I have lived with and managed HIV for 23 years….

Yet I say I survived TB….

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