HIV/AIDS diagnosis: Carenity Members tell their story

Survey conducted by Carenity among 101 patients living in the United States.

On average, patients waited 13 months and consulted 2 doctors before reaching their diagnosis.

Yet, a majority of respondents experienced symptoms consistent with HIV. Here are the symptoms that alerted them to a problem:

Night sweats | Diarrhea | Swollen lymph nodes | Weight loss | Fatigue | Rash | Fever 

Before receiving proper diagnosis and treatment, HIV patients had their daily lives turned upside down by their symptoms. Respondents saw almost every aspect of their daily lives significantly affected by their HIV. Respondents indicated that their love life is the most impacted by HIV, followed by their social life. Chronic fatigue was the most cited symptom: 

Love life - 52%

Chronic fatigue - 56%

 Social life - 55%

Leisure and physical activity - 45%

 Family life - 44%

Professional life - 40%

Chronic pain - 22%

On the other hand, 88% of respondents were not victims of a misdiagnosis. Their symptoms were well recognized as signs of HIV. However, some were diagnosed with the following diseases:

Recurrent urinary tract infections | Cryptogenic organizing pneumonia | Fanconi anemia | Kidney stones | Malaria | Pelvic and Perineal pain

Misdiagnosis: what patients had to say

"I had gastric sleeve surgery for weight loss on November 5th and by Thanksgiving was in the hospital for severe dehydration. They gave me fluids and sent me home, and this was repeated several times before being admitted later for pneumonia. By the end of the month when I had been in and out several times they finally tested my lungs to see what kind of pneumonia it was and I got diagnosed with HIV."

"I was given a false diagnosis by several doctors. I may have ruined someone's life because of this misdiagnosis and having intercourse when I didn't know."

"I went to the ER twice but was given the wrong diagnosis both times. It wasn't until I went to my general doctor that it was finally discovered. I stayed in the hospital for two months with no support or help, because my wife had to stay with the kids. I've been tired and haven't been able to do anything since I was released."

Being diagnosed with a chronic illness can be life-altering. Getting a diagnosis of a chronic condition can be a different experience for many patients: they may be relieved to have a diagnosis and be able to begin treatment, but they may also see it as frightening and brutal.

Most HIV patients were expecting to receive their HIV diagnosis. It should also be noted that 36% of patients had done some research on the internet beforehand, which may explain this percentage.                   

 It was frightening - 42%

It wasn't a shock, I was expecting it - 32% 

It was brutal - 14%

I didn’t feel anything in particular - 14%

I don't remember - 9%

It was a relief - 8% 

The healthcare professional plays a key role in sharing the diagnosis with patients. Sometimes patients do not feel sufficiently listened to or informed about their condition; others, on the other hand, are grateful to their doctor for having supported them through this moment.

For Carenity members with HIV the healthcare professional was an ally. Patients appreciated that their doctor remained calm and empathetic and took the time to explain their illness to them.

61% - The doctor was very calm
57% - The doctor took the time to explain
48% - The doctor was empathetic 

12% - The doctor was cold and distant
8% - The doctor didn't seem to care
6% - The doctor used only scientific jargon
5% - The doctor went too fast when explaining 

The announcement of the diagnosis: what patients had to say

"I went to get treated for Hepatitis C and they called me back for results of bloodwork. They told me I was HIV positive, that they had run the bloodwork twice, and they were sorry. They also told me they had already referred me to one the best specialists. My doctor was there for me, she talked to me for over an hour about what I was feeling."

"When I got the diagnosis, they first told me which other diseases I had tested negative for and then they gave me HIV diagnosis last. My doctors were very informative, they let me know that this is not a death sentence. They really counseled me and assured me I will be OK."

"I was called and received a voicemail to follow up after STI testing. All other results were given as negative, except HIV. By process of elimination, the writing was on the wall."  

Following their diagnosis, 68% of patients felt anxious and 51% felt lost, but 38% felt determined to fight the disease. Additionally, 32% were angry and 45% were shocked. Loneliness also weighed on them: 48% felt alone, 14% misunderstood by those around them.

 Many thanks to all the participants in this survey! Our Carenity members took the time to share their experience to help other patients get the right diagnosis sooner.

 "My doctor was very supportive. She let me know she has my back and gave me time to take it in. She made me feel that it's worth fighting. Just hang in there!"

"My doctor was very supportive of me and he tried to make me feel as comfortable as possible and again let me know that it is not a death sentence. My doctor is still supportive of me to this day."

"I don't have any complaints as to how my doctor was with my care. She was very empathetic and gave me all the time I needed to cry and process it. She held my hand and sat there with me, in silence, while I was crying. She couldn't have done better to be honest. She continues to check on me today, I can say that she truly cares."

"I appreciated the straightforward way the doctor told me, but she was very cold and distant, not at all comforting. I think doctors should be compassionate and take it slow with new patients."

"After my diagnosis, there was no direction on what to do, where to go for help, or how I was supposed to live with this new information. I would have preferred to have some type of direction on how to proceed. Instead I had to figure it out on my own and suffered for many years later." 

Do the results of this survey reflect your story?
Let's share our experiences and discuss together to move things forward!
Share your thoughts or questions with us in our HIV/AIDS community here!

Take care!