Q: I am ready to crawl in bed and never get up. I can't believe how unfeeling my whole family is. Let me explain: My significant other "Brad" died three months ago from complications from AIDS. We were together for almost 10 years. I've always known that he was HIV-positive. In fact, we met when we were both volunteering for a local AIDS network function. We dated for about a year before I moved into his place. For the first few years, HIV had little effect on our lives other than the medication he had to take, the doctor's appointments and blood tests. He responded very well to HAART (highly active antiretroviral therapy) until about two years ago when his immune system started to fail. Then, he became much weaker and started experiencing fevers, night sweats, weight loss and kept getting minor infections. The doctors kept changing his medication, and he had lots of side effects from his meds. Brad and I were both confident that they would figure out the right combination of medications, and he would be OK again.
During this time, we didn't see much of my family or friends because we were so consumed with – and fatigued from – fighting this disease. Brad ended up getting pneumonia (PCP) and died a short time later. Even though we knew he had AIDS, I wasn't prepared for his death. I always felt that between the two of us we could overcome anything.
Since his death I have been so devastated that I can hardly function. I have to continue working, but that is about all I can do. I go to work and come home and just want to go to bed. During my relationship with Brad, my family was always friendly and seemed glad that we had found each other. We didn't spend a lot of time with them but was there for holidays, birthdays and times like that. Since Brad's death my family has not been very supportive. They keep telling me I just need to get on with my life.
The other night one of my brothers and my parents came over to see me. I was happy to see them as I was at a terrible low point; I didn't know if I wanted to live or die. When they left I felt worse. They said they were speaking for the whole family when they said that I needed to pick up my life and get on with living. They told me Brad and I knew that he had HIV when we got into the relationship, and that I must have been aware of the fact that he would eventually die. They also said that they were horrified when I decided to live with someone with HIV but had decided it was my life so they tried to be supportive. I felt more reprimanded than supported that night. I couldn't believe they could be saying these things. It was like I was having a bad dream and couldn't wake up.
Now, I don't feel I have a family anymore. I don't think I can ever forgive them for the things they said. I feel lost and am so lonely and depressed, and don't think I'll ever feel good again.
Lost in my Loss
A: I'm so sorry for your loss. It is hard to believe that your parents and brother would be so unfeeling and inconsiderate and do what you have just described. It's unconscionable. Though you will always feel pain from having lost Brad, it will lessen with time. Now what you need is to be able to heal. In order to do that, you need supportive people around you. Though your parents and brother claimed to be speaking for the whole family, this might not be true; so don't count out everyone in your family.
I'm hoping you have friends that you can call upon who can give you support during this time. (Even if you haven't seen them in a long time, get back in touch. Your real friends will understand what has been going on with you.) Let your friends know specifically what you need. For instance, you might just want to go do something that will be distracting, and at other times you'll want to be able to talk about Brad and all you went through with him. You can't get what you need if you don't let others know.
There are groups for people who are grieving, and they can be very helpful. In fact, I highly recommend them. There are folks going through the death of a loved one, like you, and they understand and are experiencing many of the same feelings and problems as you are. Your local AIDS resource center should be able to help you with finding a group, or try your doctor, clergyman or funeral home. If the above resources aren't enough, I suggest you find a counselor to help you through this time. Let me know how it's going. I care.
