The fear of starting treatment is worse than the treatment itself

http://www.tac.org.za/documents/arvsinourlives.pdf

http://www.csa.za.org/article/articleview/377/1/1/

A number of people I see are deeply fearful and nervous to take medication for HIV. I'm not at all surprised, in fact I think it is quite understandable given all the bad press ARVs have received over the last number of years. Thabo Mbeki's government certainly contributed to the misinformation and stigma around treating HIV but, it goes further than that.

Imagine I were to tell you you have cancer. Everybody knows that chemotherapy is very potent and that you may lose your hair and vomit and may become really sick from the drugs themselves. A lot of HIV positive people think that this is true of ARV medication too. There are stories of ARV's being deadly and toxic, and stories of ill health starting within days of starting treatment. They are stories and so you should always provide a healthy dose of scepticism to these sensationalist tales. But, the converse applies too - and you should question your doctor about the medication, make sure that you are satisfied that you have been informed of the possibilities, learned about the side effects and the benefits.

I often say to my patients that starting ARVs is nowhere near as scary as the anticipation. This is because that in the anticipation there are all the 'What Ifs' - what if I have a bad reaction, what if I get sick, what if I am allergic, What if the drugs kill me? These possibilities are so much scarier than actually taking the pills and it is easy to get bogged down in the fear of treatment.

Indeed ARV medications do have side effects and do take some getting used to. But then, even Disprin and cough syrup have side effects. The difference is, that few doctors warn you of the potential side effects of cough syrup when they prescribe medicine for your cold. Doctors who treat HIV are very aware of the stigma and the myths, and take more time to counsel and inform patients. The perceived greater risk of side effects from ARVs is largely because counselling about side effects of 'regularly used' medications is rarely offered. Not because the danger isn't there. If you do get side effects, they are usually temporary and will subside once your body gets used to the drugs. In most cases, you can continue your ARVs with minimal discomfort and wait for the side effects to disappear. In other cases, you may require medicine to help to control the side effects. And in a very small number of cases, your doctor may stop your treatment.

Another fear people have, is that they will not be able to take their medication 'on time'. It is true that the stricter you can be in taking your medicine on time, the longer the drugs will remain effective and hence, the longer you are likely to remain well. I find that most patients cope really well with taking their medicine on time - it is simply a matter of forming the habit from the beginning. For example, if I interview you for a job and inform you that you are required to be at work at 8 am and leave at 4 pm, it is unlikely to send you into the throes of panic is it? You accept that in order for you to get the job and succeed in the position, then you will need to be at work on time. Yes, it does give you the inconvenience of dealing with traffic, and costs on petrol, and you can't meet a friend for breakfast during the week. But, the job opens up freedoms to you too - personal achievement, financial security, career growth.

Now, it is the same for taking ARVs - yes you are required to take them on time which does restrict you somewhat, but for the gain in health, the return to independence from illness, the ability to make future plans, isnt it worth it?

Anybody who requires medication for their health - diabetics, hypertensives, epileptics, people living with HIV; has to overcome the fear of taking medicine. You cannot win a competition that you have not entered for, and so, you cannot experience the health reforming benefits of ARVs if you are too afraid to try them.