Are you OK?

I recently made a comment to a friend that the buzz around promoting positive living with HIV seems to have somewhat died down. Her response was, “err yes, it’s like everyone is ok now. I guess we can close shop”. We laughed about it and moved on to other things.

On the contrary, it does not look like people are ok out there. After that conversation I began to notice that I am having too many “are you ok” conversations. Amongst them was a SOS text from friend. It read, “Hi Pholo. I am feeling tired of taking my medication. I need someone to talk to”. A week later a colleague told me about a common friend who is also said not to be ok. She is missing the social platforms people living with HIV used to be part of in the past. Then there was Thandi and Zindle. “Pholo, we are not ok,” Thandi reminds me every time I see her. Zindle is also going through it. “Bhut’ Pholo, I am not good at all. I need to talk. I have a lot of anger”. I can count several other people I have had similar conversations with. The last person I spoke to called as I was finalising this blog. All of them have the same cry, “we are not OK”.

This got me wondering about the current physical and mental wellness of people living with chronic illnesses like HIV. Are they ok? I wondered.

I hold a view that not much is being done when it comes to providing psychosocial support for people living with HIV. At least not like before. Most of us, the carers and voices of positive living, have put our foot off the paddle. HIV fatigue kicked in. I certainly I got burned out. COVID19 made things worse. It’s like we went into hibernation when it comes to issues of people living with HIV.

Think about it this way. Beside in the health system, when was the last time you heard someone share HIV information that was not about treatment? When was the last time you had a meaningful and good for the soul conversation about living with HIV positively? These days most of us have those conversations only when we go for our routine HIV monitoring check-up. Even those conversations, with our healthcare providers, have become shorter and somewhat sterile. You go in, they ask how you are doing – sometimes not. They take the blood and next time you see them is six months again.

I now have more conversations with my doctor about my other struggles – diabetes, hypertension, cholesterol and high stress levels than HIV. Oh come to think of it, having to deal with other diseases while living with HIV adds to our stress levels. Add that to the amount of medication we must take for those other illnesses. We are treatment fatigued. It’s a lot. We are not okay!

So, what must one do with these overwhelming challenges? How does one become ok with being HIV positive, diabetic and hypertensive at the same time? I don’t have all the answers. Here is what I know. We must find a way to be ok. It could be talking to someone, joining groups that are good for our physical and mental wellness. You could read more about HIV. Yah, I know. Good information about HIV is rare these days. But it is out there.

You know what! The point is this. You need to do you in a way that will keep you well, physically and mentally. What you shouldn’t do, is being alone or not take care of yourself. NEH!

#lifebeyond #diaryofpr #pholoramothwala