Taking a turn on this blog to something much more personal — from boots and such to issues of what it’s like to be gay, have a long-term infection, and have others make absolutely wrong assumptions about underlying causes of ongoing symptoms “just because he’s gay.”
Here is the gory story…
Readers of this blog have read posts that I have written about my partner suffering with a long-term illness that is caused by organisms transmitted by a tick. Ticks flourish in our wooded back yard, and usually feast on deer, squirrels, rabbits, foxes, and other mammals that regularly live there or walk through. Ticks love warm human blood too — and one of them crawled onto my partner, bit him, and while attached, transmitted organisms it was harboring to my partner.
My partner did not display a rash that some people initially have when the disease first appears. The disease hid inside his body and then began displaying odd and unusual symptoms. We had several “distractions and diversions” when trying to find the cause of his symptoms, including discovery of a non-malignant brain tumor and surgery to remove it, as well as treatments for neurological symptoms, sleep disorder, and much more.
In February, a confirmed clinical diagnosis of his disease was made, based on results of initial blood tests. We began actively pursuing a course of treatment. But all along, based on thorough documentation of my partner’s symptoms, I had suspected that he may have what’s called a co-infection. That is, being infected by two organisms at the same time. If treatment for only one organism is provided, then symptoms persist and he doesn’t recover. That’s been the current situation — months of treatment with no recovery in sight.
Five medical specialists with whom I shared my research and observations discounted my suggestion of the possibility of my partner being infected by a second organism. “We don’t have that (second disease-causing organism) in Maryland. You’ve been reading too much on the Internet.”
But what was worse is that we had two doctors say, “after all, he’s gay. While his tests for HIV are negative, that doesn’t mean that he does not have a suppressed immune system and potentially an infection by as-yet undetectable HIV. That’s why his symptoms are persisting. He will just have to live with it, and accept it as a result of being gay.”
Man! We were furious! We can’t sue for misdiagnosis and refusal to request tests that would confirm my ideas, nor can we sue for wrong conclusions by a doctor. Medical opinions are just that — not hard science. Medicine is more of an art than science.
“He’s gay — he must have HIV — just live with it.” ARRRGGGHHH!
Trust me, my partner (and I) have never been exposed to HIV. I will not provide graphic details, but put it together: we don’t have it and never will.
Finally, I convinced my partner’s primary doc, whom we admire greatly, to request a very specific blood test for that odd co-infection. That test is only done by one laboratory in the United States, and its very expensive cost is not covered by insurance.
We were stunned when the doc called us on Wednesday night to inform us that my suspicion of this odd, never before seen in Maryland, co-infection is correct. My partner has it.
You see — this is what “patient advocacy” requires. Never giving up. Doing the research. Documenting everything. Being doggedly persistent. Tolerating inaccurate, wrong, and outdated assumptions by medical professionals. But overall, stepping up and carrying out care for the one you love.
As I’ve explained to my family, during the times that are most dark and difficult for my partner, I just love him harder. My faith in resolving this illness remains strong. We’ve taken the matter into our own hands and are fighting each and every day to make him well.
Life is short: show those you love how you love them, and forgive those who make assumptions because their “straight lens” clouds their judgment.