Health is wealth is the age old saying. I think that saying means that the healthier you are the wealthier your body feels. It also reiterates that we have to do what's necessary to reach the "wealth" determined by our health. As a healthcare worker, this sounds good but what do you do when this isn’t enough? Sometimes I want to be healthy as I can be. It's hard when I can not trust my providers. I can not trust that they know what is best for me. I have had a number of ailments unrelated to HIV, but doctors couldn't figure some things out because there wasn't a direct connection to my status. For example, I had issues with my cycles once they tried birth control and it didn't work. Not because the medicine wasn't good but because it wasn't effective with the treatment I was taking. Do you know who figured that out? Me.
I had to have surgery, but in retrospect if a closer look would have been taken, we may just should have tried a different birth control method. I learned this because I had no choice but to advocate for myself. I know I am a healthcare worker - I should know it all. I don't. It's impossible to know everything, especially when it's an area you don't deal in every day. This is the same for healthcare workers. That's why one of the first things I like to teach women adjusting to their new diagnosis is to Research, Educate, and Advocate for themselves. I was in the medical field and saw the gaps in education in the care of patients. It was not someone's fault per se. It's hard to stay up on the tons of information.
This is really important because due to stigma and other things sometimes we don't share our status with doctors because we think it doesn't matter, when it does. We also don't tell the whole truth about what is going on, because of fear of judgment and other mindsets. The first step to changing the culture around stigma is to first not stigmatize yourself. In any condition you have to take the first step and say hey, I have to learn about my health. Regardless of personal feelings a healthcare provider may seem to have, your health is more important. You have to be the one to make the first move and advocate.
Yes I know we need more education, sensitivity and compassion. There are a lot of things healthcare workers need and guess what? We know it. Things are changing rapidly and we are catching up. I apologize that we fail in some areas. As a person living with HIV, I know that we fail too sometimes. We have to give each one grace and work together so our health can be wealth. By doing this we teach people how to treat us. If you act frail and broken you will get treated that way. If we get frustrated all the time and don't make changes nothing will change.
I don't want to offend you, but we have to create solutions. I am in the process of creating these solutions in my local area. I am beginning to look to see, what are the needs to bridge this gap? While working, I helped a lot of workers understand HIV in a new light and it created a passion in them to do more to be honest. I feel it's my responsibility to do the same for you. I want to share with you some information and tips to bridge the gap with your provider.
- Get to know them, I promise we don't bite
- Come in with questions that you have and ask whatever you want
- If you don't like the service, request an alternative person if at all possible
- There are ways to report inappropriate behavior. Please take advantage of this.
- Share your status and medications
- Keep latest results with you so they can see if it's not your regular doctor
- Tell them if you don't have access to meds or services
- Correct them often with language and boundaries
- If they don't know, educate; it could help the next person
- Always ask about interactions and other things with new meds and treatment
- When looking for doctors, ask a friend or try the internet; patients write reviews
I hope this can really help you start to speak up more and bridge the gap between healthcare workers and HIV positive patients. I would love to know what you have to add to this. This is really something I want to assist in fixing. If we do not use our voice, it won't be heard.