Many times with HIV+ patients, it is difficult to get the story beneath the story, to know exactly the best way to counsel and to support. Often, patients are afraid loved ones will leave or look down upon their diagnosis.
But as in most cases, what we hide from others is not as much as we are hiding from ourselves.
That’s what the counselors and medical team at The Luke Commission discover as they phone HIV+ patients, visit personally at their homesteads, and take each one to the clinic of his choice. Then there are the follow-up calls and the follow-up visits and the follow-up facts, which may change the whole story.
It’s all a matter of linkage, getting to the heart of the matter with perseverance and determination so patients can live and thrive while HIV+. And time, sometimes a long time.
Such is the case of Simphiwe. (Though not her actual name, the details are.)
Simphiwe tested positive in 2016 at TLC outreach in her rural community. Initiated into antiretroviral treatment (ART) at the outreach, Simphiwe requested going to at a clinic near her home. TLC phoned her to see how she was doing. Subsequent calls and a home visit revealed little, except denial. Often, she did not even take the calls.
A couple years later, Simphiwe came to TLC’s Sidvokodvo campus, looking ill and feeling poorly. She wanted to see the doctors.
Simphiwe said she had forgotten her green book, which records the visits to a patient’s clinic of choice. TLC called the clinic and was told this patient did not come regularly for refills.
“I always suspected there was a possibility that she was not taking her meds. Please tell us the whole story, so we understand,” said a TLC staff member.
In her weakened and probably scared condition, Simphiwe explained: “Sometimes I missed three days in a week. I did not want others to see me taking my tablets. My boyfriend has been on ART since 2013. He has never known about me and my status.”
She blamed her mother for not supporting her. “I am angry with her. She labeled me with my status, even though she was supposed to be my treatment supporter. That’s why I decided not to go to the clinic again.”
The Luke Commission counselor apologized to Simphiwe, and journeyed with Simphiwe. “For a supporter, you need someone you can trust and will help you adhere to the treatment. You know now how important it is to take your meds every day.”
Simphiwe will re-initiate, but now she must go to the second line of antiretrovirals. Her health has deteriorated and her outward appearance shows her inner struggle.
Will she tell her boyfriend?
Will she forgive her mother?
Will she take her tablets, knowing that her life is too precious to lose?
“Yes. Thank you to all the people who give us medications and hunt for us when we hide.”
“You’re welcome, Simphiwe.”