for Health Care Providers
Perspective from Dorothy B, a Veteran
This is a brief history of my journey with HIV. I received a transfusion on May 28, 1982, after giving birth to the most wonderful baby girl in the world. That event changed my life forever.
It took 2 years before the symptoms became so debilitating that my doctor finally ran an HIV test. At the time, it took 7days to get the results.
The testing center was an old room in the Orlando health department. The technician put on her gloves without speaking to me, scratched her head, moved papers around, and so forth, clearly a message that the gloves were for her protection, not mine. Seven days later, my doctor gave me the results in his waiting room and told me he did not treat "this kind of thing." I worked for the hospital in which he practiced and was called in the next day, and told to remove my things from work and go home. The doctor I was referred to told me I had 6 months or less to live, described vividly how I would suffer wasting and dementia, and informed me that I was highly contagious. I went home to my 5 beautiful children, scared to death to touch them, and a husband who was scared to death to touch me.
I became angry.... At that time, this was called Gay Men's Syndrome. I called every gay man I knew until one told me never to tell anyone and said that there was a drug trial going on in Boston. I called my cousin in Boston who got me into an interferon trial for men only, as a transvestite.
Interferon is a hard drug. I drove to Boston once a month for 1 year to pick up my medication, and I gave myself the shots at home. I would have a reaction 4 hours after the shot, so I planned my day around being in a heating blanket for 1 hour every afternoon, 4 hours after the shot. By the time the trial was over, other drugs were being tried, but only on men. So, I found a doctor in Mexicali who had a boat that came to Miami often. He smuggled my medication in for 2 years. During that time, I watched a teacher in a nearby town have her house burned down. I watched two brothers forced out of school and driven out of town. The government proposed opening the old TB hospitals and quarantining us. I separated my dishes from those of my family and had no intimate contact with my husband.
When drugs finally became available, I drove 50 miles to a pharmacy where no one knew me and spent $1,500 month for medication. Social Security turned me down for disability until I asked the representative if she wanted me taking care of her mother as a nurse; then, I received disability, but no Medicare, for 2 years.
I remember going to the local fire stations and asking to use the bathroom so I could check their bulletin board, because they had a list of "houses with AIDS" where they did not answer calls. I never got "outed" and never made the list. My sister panicked because the St. Petersburg paper published a list of known AIDS patients, and she was afraid her friends would find out. My mother told all her friends I had cancer and my husband told all his friends I had depression and couldn't work.
Then I found VA. I am alive today because of VA. I pay for my visits and medications, but the cost is a lot less than before. I am treated with dignity and my care is cutting edge. Today, I work as a Registered Nurse, am single, and have 5 wonderful adult children and 10 grandchildren. I am a symbol of the special success that can come from taking ownership of your illness and life and having a good VA support structure. Thank you for this opportunity to "out" myself.