Stigma definition:
1.
a mark of disgrace or infamy; a stain or reproach,as on one's reputation.
(Source www.dictionary.com)
HIV sure does have a blemish in its' reputation. So much fear of how it is spread. Fear of catching it, of it killing. In China it is widely believed that HIV can be spread by shaking hands or hugging. Poeple with HIV are evicted from housing, fired from jobs, and regularly denied medical care. HIV positive orphans are isolated, and often left to die. There are organizations working to change this. They work to educate, to provide foster homes for HIV positive orphans, to help families stay together by helping with jobs, food or housing. While in China, this was a big concern of mine. There were people who needed to know, our guides, the medical clinic, and all the officials since the special need is on all of the official paperwork. I had no issues. Several friends did run into some issues. Our guide in province was very up front and told us when he picked us up from the airport that he was not scared, and had worked with HIV positive kiddos before. Our guide in Ghuangzhou seemed a bit nervous at first,but quickly warmed up and asked good questions. This was her first time working with HIV. Our agency did a great job educating her ahead of time. She never had an issue with hugging or touching my kiddo. I was actually most concerned about the medical clinic. I know first hand that healthcare workers fear HIV. Would they treat my kid differently? Three days of sputum testing is required so we would see them a lot. I was pleasantly suprised. The nurses and physicians were very professional and it did not seem to blip their radar.
The stigma for HIV is worse, in my opinion, than it is for other infectious diseases such as hepatitis. Scott never really hesitated to say yes to hepatitis, but was hesitant to say yes to HIV. Hepatitis B is actually so much more contagious than HIV. The viral loads are in the millions, and it lives on surfaces for over 8 hours. Air does not kill it. I see this in healthcare workers too. I work with blood exposures and most everyone is much more frightened of catching HIV than hepatitis B or C. Hepatitis can lead to liver failure, and the meds are so much worse in terms of side effects, and the viral load is almost never undetectable. But HIV has that stigma. The reason many families choose not to disclose is because of the stigma.
So disclosure. Who do I have to tell that my kiddo has HIV? Short answer is no one. HIV status is protected at the federal level. Which means if Aunt Susie tells her Sunday School class that your Sally has HIV without your permission, then she has committed a crime and can be prosecuted. You do not have to tell the school, the sports coach, the pastor, the dentist, or anyone. Of course it is wise to tell those who may have penetrating blood contact such as the dentist and doctor. We made sure the OR staff knew before the dental surgery because most needlesticks happen in the OR.
There are reasons in favor of disclosure. The biggest for us is that general medical knowledge about kiddos is known. I know which of my friends kiddos have diabetes, heart conditions, Hepatitus C, cleft lip and palate, missing limbs, hearing loss, down's syndrome, hemophilia, and orthopedic conditions. My friends post when their kiddo breaks their arm or gets stitches. So why should HIV be different? Keeping the details of the medical condition private is not hard to do. I do not know the dose of insulin my friend's kiddo with diabetes takes. I do not know the dates of the medical check ups. I have no idea what the details of treatment are. They do not post on facebook recent lab results, or what new medication was given. I do know that if I have a question about arthrogyposis I can ask Brandi or Katie. Questions about heart conditions, I ask Sarah, Christa, or Rene. Cleft questions I ask Dawn, Angela, or Gwen. You get the idea. Disclosure can happen without invading privacy.
Another reason to disclose is that normalizing HIV is one of the best ways to fight the stigma. We act like it is no big deal because it is no big deal. We also do not want secrecy and fear to be a part of this. There is no worry they may accidentally tell someone. We have had some great questions from friends and family, and honest questions are always welcome. We do not expect everyone to be a HIV expert.
We obviously disclose, but we really do not tell everyone. Friends who do not read my blog probably have no idea. We did not tell the school last year. It is not something we bring up all the time. Honestly we don't think about it all the time.
Disclosure is such a hard thing to decide. I have friends who do disclose, those who don't, and those who fall in the middle. I have friends who have lost family and friends after telling them they were adopting a HIV positive kiddo. I respect the decision of all of my friends, and I think it is an individual family decision. I will and do support the families who do disclose, and those who do not. We all agree that the stigma needs to end, and that there is no reason to fear HIV.
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