Latent Diagnosis: Living Undiagnosed
Without the proper testing, some cases of HIV can persist for years without obvious signs of infection.1
I remember waking up in the ICU with an intubation tube down my throat. My best friend was sitting next to my bedside. I was so confused. It was obvious I was in the hospital, but I had no memory of leaving my home. The last thing I remembered was going to bed.
How did I get here?
Apparently, my husband had taken me to the urgent care in the middle of the night. I was sick enough that the urgent care sent me to the hospital by ambulance. All they initially knew was that my lungs were almost full of fluid.
Even after regaining consciousness, I stayed intubated until the end of the 2-week period – the maximum time the hospital is allowed to keep someone intubated. While I was unconscious, they determined that I not only had pneumocystis pneumonia (PCP) but that I was HIV positive as well. This was a shock to all of us.
Living undiagnosed with HIV
Since the HIV diagnosis was new to us, the doctors analyzed my bloodwork. Their best guess was that I had been living with HIV for 8 to 10 years. We are talking about living a decade with undiagnosed HIV!
When they first told me that I was HIV positive and my husband was negative, I took the dry-erase board and immediately asked him if he was going to leave me. Once he told me no, I asked how. That is the question that nobody could answer.
Can you imagine waking up intubated in the ICU and learning you have had HIV for 8 to 10 years? I could not actually speak. I only had that small dry-erase board to communicate through. My mind was reeling, and I felt like I was drowning in my own emotions.
After they removed the intubation tube, they brought in a hospital psychiatrist to talk to me. Since the infectious disease doctor did not bother to educate me about living with HIV in today's society, the psychiatrist had to educate me to try to calm me down.
At what age were you diagnosed with HIV?
Medical field failure
You may think, well, that is possible when you do not go to a doctor regularly. However, I was being seen regularly by multiple doctors for endometriosis and chronic migraine. I developed chronic migraine 8 years before my HIV diagnosis.
My sister went to see her OBGYN while I was in the hospital and asked her how my situation could have occurred when I was being seen by an OBGYN. This is how we learned that the only way a patient is checked for HIV during a well-woman exam is if they specifically ask for an HIV test.
The HIV test is a separate test done by a blood draw. Since it is a blood draw, whereas the others are a swab, it is frequently skipped. For some reason, this information is not common knowledge.
If HIV prevention is such a high priority, why aren't women being tested regularly at their annual OBGYN visits? I truly believe that an annual well-woman exam should automatically test for all possible STDs. A form should have to be signed to skip the HIV test.
Over the years, I saw several doctors for my migraines. One day I strangely went from having episodic migraine attacks to having a migraine every single day. I tried countless medicines. Even though I saw several specialists, I was never tested for HIV. It was not until after my HIV diagnosis that I had another provider say that I should have been tested for HIV when I presented with chronic migraine attacks.
Some studies have shown a relationship between HIV disease, marked by CD4 counts, and the frequency and severity of the headaches. Generally, people with the most debilitating headaches tend to have the most advanced cases of HIV.2
I cannot help but wonder if I continue to fight with chronic migraine due to how advanced my HIV was when I was diagnosed. When they discovered I was HIV positive, my CD4 was only 35. This means I technically had AIDs. While my CD4 count has drastically improved, I still suffer from regular or chronic migraine.
Coming back from a latent HIV diagnosis
The general population does not know they need to request separate HIV testing at annual well-woman exams. Who knows how many people are living their lives HIV-positive without knowing?
All women need to be educated about asking for HIV testing during their annual exam. It is so important to take an active role in your own healthcare journey. Sometimes we have to demand a certain quality of care from our providers.
How long have you been living with HIV?
Have you ever been unhoused or insecurely housed?