Monday, November 22, 2021

In Grief: Keeping The Secret of An AIDS Diagnosis

Nothing makes us so lonely as our secrets.  ~ Paul Tournier

A reader writes: I'm not really sure what I am looking for. This will be the first time I say these words to anyone other than my husband or sister. Even my own kids don't know the truth, but I feel I need support right now and you've been so helpful and kind.

My mom died of AIDS last month at the age of 68. Barely one week later, my dad was diagnosed with full blown AIDS. He is 70. Today I spent the day moving him from the hospital to a nursing home. We were shocked when my mom was diagnosed, after being sick for a year. They did every kind of test in the world, except an HIV test. She was so sick by the time they did the test. We spent the last year taking care of her and watching her slowly leave us. During the last few months of her life, I started really thinking and searching thru things in my dad's life. I discovered a life-time of lies and deceit.

I cannot put into words the rage that I felt. After my mom was diagnosed, my dad said he got tested and was negative. I don't believe that he got tested, or else he lied about the results. My mom died never knowing how she became infected. 

And now, I am the primary care-giver for my dad. I have not only lost my mom, and am watching my dad die, but feel I have lost my identity. The family I thought I had, wasn't real. I feel so much loss on so many different levels. And then there is the anger I feel towards my dad. I am taking care of him because my mom would want me to. I have managed to find a place in my heart that I can forgive him, because the anger and rage were killing me. It's not who I am. As you can see, I am in a horrible place and cannot find anyone that has been thru this. I miss my mom so much and cannot believe that I now have to watch my father die from this horrible disease. Thank you for listening, this was so hard to do. This is a nightmare I can't wake up from. I am starting therapy and hopefully that will help. Any ideas you have would be appreciated. Thank you. 

My response: Oh my dear one. I'm so sorry to learn that you've been burdened with this, and I thank you for trusting me enough to share what you just did. Please know that I deeply appreciate how difficult that must have been for you to disclose, and know that I cannot begin to imagine how all of this must feel to you. Certainly I can guess how I might feel in your situation, but we both know that I am not in your shoes. I do know this: You have made the right decision by getting yourself into therapy, as it will give you a safe place to take all those feelings, expose them to the light of day, and sort through all of them. This is too much for you to bear all by yourself, and I applaud you for having the good sense to take this important step. Whether you decide to share this with anyone else is totally up to you ~ but I hope that you will continue to avail yourself of whatever information, comfort and support that is offered to you. See, for example, some of the resources listed below ~ and do let me know how you are doing.

Afterword: Thank you so much for your kind words. You are right, after writing to you it does feel like a huge boulder has been lifted off my shoulders. It's been so painful, not to have anyone to talk to about all of this. (My husband is great, but I think sometimes he needs a break from listening to me!)

After I put all of this down in writing, I went to bed and for the first time since my mom died, I dreamed about her. She looked wonderful...healthy, like she did before she got sick. It was such a nice feeling when I woke up.

I just wanted to share something else with you. When my mom first was diagnosed, I contacted my state's AIDS service organization. I had no idea what to do. I met a wonderful woman there, who was so helpful. She just called me this morning. It seems they are looking for some powerful stories to share on their website and she wanted to know if I would be willing to share our story. It will be private and names are not used. They believe my parents' story will show the diversity of people effected by HIV. But most importantly they want to tell the story of my family's love and support for my parents during their illness. They believe other families will benefit from hearing about us.

Last Sunday my brother was at church, there are 4000 members in his church. He was sitting by a woman he didn’t know. He was really struggling and emotional. This woman introduced herself after the service. She runs the church's AIDS ministry. My brother said he had no idea why but he confided in her. She hugged him, took him for coffee and wants him to help her group. So between these things and your help, I think God is sending my brother and me a message! All of this just seems so right, it feels like the path I am supposed to take to start healing. Thank you for listening.

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