When I was first diagnosed in hospital, I didn’t know a whole lot about TB. In Australia it’s very rare, and although I had seen people in movies with TB, or heard of people dying from it many years ago, I had no idea of what it would mean for me that I had been diagnosed with it. I did a lot of Google’ing and reading online, which was a pretty scary experience. The Internet is full of figures, facts, and lots of bad stories. There are statistics that show people dying in the millions, as well as heaps of pictures of people and places that have been ravaged by the spread of the disease.
Needless to say, the picture only got worse when I was reading about DR, MDR and XDR cases of TB. When the doctors told me that I had MDR-TB, the seriousness of my situation was amplified, and I realised that I was in for a long recovery.
I wanted to steer away from the negative press, and the horror stories that seemed to fill the pages online, but at the same time needed to learn more about my situation and the things that I could do to ensure I would be in the best position to fight the disease. The best way to be able to learn about what I should do, and what I was in for, would be to talk to other TB patients and hear about their experiences, as well as share my own along the way. There is something about shared experiences that help you stay positive. I suppose it’s nice to know that you are not alone, that there are people out there having positive outcomes, and that you have the support of other people. Particularly when you are isolated for such a long period of time.
Your friendships are placed under enough pressure as a result of the isolation and the fact that you feel like you’re becoming a fulltime patient, so you don’t want to always be venting about your health to your friends. You only get so much time to talk with them, and since you are trying to not let “being a patient” take over your personality, you don’t want to always be leaning on your friends and family. It doesn’t feel good for the dynamic of those relationships. If you are always talking about how hard it is living in a hospital, or eating a handful or drugs every day that make you feel like s***t, it doesn’t feel like you are moving your own real life relationships forward.
In saying that, if you are in the active stage of TB, it’s also important to let your friends and family know when you have it. If you start keeping it a secret, or are too scared to tell even those closest to you, then it maintains the stigma that it is untreatable, or that people with TB are dirty. When someone is receiving the right treatment, and taking all of their drugs, there is nothing for anybody else to be worried about. Once the active stage of the TB has finished, and a doctor has cleared you officially, you can’t pass it on to other people, and won’t be any danger to your friends, family or community.
So when I was hospitalised, I was trying my best to find places that I could hear other patients talking about their own experiences, but there were only a couple of websites I could find where people shared their own TB stories. Most of the better sites cover broad medical situations, and it was rare that I would find people talking about TB or their own personal experiences with it.
I was lucky that because of the online Fully Sick Rapper videos I made, people from all over the world started contacting me directly through Youtube and Facebook. I began to have lots of conversations with strangers from the other side of the world, and lots of people were writing me online telling me about their own situations, so it was kind of like support counselling for me. Many people aren’t so lucky, and it is very important that throughout your treatment, you understand that it is very curable, and that there are a lot of happy success stories out there. People who finish their treatment, and comply with their drugs, generally have positive outcomes. When you’re at your lowest point, it is really nice to grab hold of any positive stories, and take advantage of anything that makes you feel hopeful. It’s always good to know that you’re going to be okay!
So when Médecins Sans Frontières asked me to write on this Blog and share some of my own experience with TB, I logged strait on and started typing, because I think that it’s important for people with TB to see that there are other people out there who are going through, and have been through, the same thing that they are. I hope that by reading about my own situation, it helps you feel better about your own. Please feel free to write any questions or comments below, and I will do my best to write back to you.
It has now been 18 months of taking my medicines, and I have complied in every way, shape and form to the treatment. I’ve not missed a single dose in the time that I began treatment, I’ve not had a single night where I have had more than a drink or two, and I’ve tried my best to eat as healthy as possible. I have got two weeks left of my medications, so here’s to hoping it’s a happy ending!
Christiaan, AKA the Fully Sick Rapper, was diagnosed with tuberculosis in December 2009. In 2010 it was discovered that Christiaan actually had multidrug-resistant tuberculosis. After spending nearly seven months in isolation, plus many more taking a host of TB drugs, Christiaan is nearly at the end of his treatment.
To read more real stories of people living with multidrug-resistant tuberculosis from the TB&ME blog, refer to http://msf.ca/blogs/tb.
For more about Médecins Sans Frontières / Doctors Without Borders, refer to www.msf.org.