I guess this weekend has been a very effective lesson in trust and insight. It's not possible to survive diagnosis, breaking from a long-term relationship and moving to live alone as well as "being there" for a lot of people around me without there being some kind of kick-back sooner or later. I guess this weekend's been that lesson. Don't trust people you don't know, and, to be honest, don't trust people you do know, when it comes to your health. Well-meaning friends who have bad advice for when you're too anxious to sleep may do more harm than good and, in the end, what's needed is a bit more honesty about the situation I've been in for the last few months.
As a result, talking to my family has begun, which is daunting and I've asked for a psychology referral at the clinic to start dealing with the issues I've had around fear and guilt to do with the diagnosis. It's a hard step to take, as is talking to my family about it, but I know they're both taking me in the right direction, which is away from the sense of shame that this virus fills you with.
Tuesday, December 20, 2005
Wednesday, December 07, 2005
Breathe in. Breathe out. Relax.
Within three years, it's very likely I would have an AIDS-defining illness, given the high viral load and plummeting CD4 count that I have, but as yet, I don't have any evidence of opportunistic infections, so there's no urgent need to be concerned about it.
Yes, my metabolism is elevated to the degree that it's going to be difficult for me to regain the weight I lost and I have to get my sheets washed with annoying regularity, but in the end I'm well at the moment and that's the thing to bear in mind. Sure, if this trajectory continues, I'll have to have the talk about combination therapy in the new year, but that's something to deal with as and when it comes up. Not really a great deal that I can do about that kind of thing either way.
One thing about being single again is that I can more comfortably disclose my status, which is something I had been wanting to do, but my then-partner was anxious about the effect it would have on the people around me, or that I would have to spend too much time dealing with their grief for my death, perhaps 40 years before it becomes likely.
What actually seems to happen, though, is that my friends deal with it just fine, make fun of me about it, or say that they're in the same boat, so there's no drama to suddenly contend with. The people about whom I do worry with this is my family. I am hoping to find the courage to tell my father when I visit him next week, and somehow I really do have to tell my mother, but I know it will be difficult for them both to take in as something that isn't the death sentence I'd grown up knowing it to be. I suppose it's like coming out as gay all over again, but we're a close family and it would be ridiculous to deny them access to knowledge of a major part of my life, particularly if it's something I want to become politically involved in at some point, but I know it will be hard to let them know.
Still, there's good news. My cholesterol level means I am going to have a lower risk of heart problems, contrary to previous advice and my dentist tells me there's no evidence whatsoever of opportunistic infection in my mouth, so there's nothing to worry about just yet. Also, I don't have CMV or toxoplasmosis in my system, like 50% of the population, so that's two fewer things to worry about.
Telling friends I'm cool with, if they're friends, they'll be okay with it. Telling work just isn't going to happen, because I'm freelance, so it would be very easy for people to decide not to book me rather than blatantly discriminate against me. I'm not actually protected by the change in law, except against my direct employer and that's me, so that's not really going to help a great deal, but I suppose it will help some other people.
I've told a few people recently, though, a guy who I have messed around with a few times and felt guilty for not disclosing now tells me he's in a serodiscordant relationship so serostatus isn't an issue. I think anyone who uses words like serodiscordant is probably good to know. I told another friend, who is a scientist, who then told me he can give me heaps of advice if I do start therapy, another friend just looked sad for me, but that's also allowed. I'm not a sci-fi superhero for the virus I carry within me, it's still not a good thing to be, so yes, sadness is an appropriate reaction when being told someone is positive.
But I can only be sad for myself for so long. After sadness comes defiance, resignation and anger, but all in good time. I have plenty.
Yes, my metabolism is elevated to the degree that it's going to be difficult for me to regain the weight I lost and I have to get my sheets washed with annoying regularity, but in the end I'm well at the moment and that's the thing to bear in mind. Sure, if this trajectory continues, I'll have to have the talk about combination therapy in the new year, but that's something to deal with as and when it comes up. Not really a great deal that I can do about that kind of thing either way.
One thing about being single again is that I can more comfortably disclose my status, which is something I had been wanting to do, but my then-partner was anxious about the effect it would have on the people around me, or that I would have to spend too much time dealing with their grief for my death, perhaps 40 years before it becomes likely.
What actually seems to happen, though, is that my friends deal with it just fine, make fun of me about it, or say that they're in the same boat, so there's no drama to suddenly contend with. The people about whom I do worry with this is my family. I am hoping to find the courage to tell my father when I visit him next week, and somehow I really do have to tell my mother, but I know it will be difficult for them both to take in as something that isn't the death sentence I'd grown up knowing it to be. I suppose it's like coming out as gay all over again, but we're a close family and it would be ridiculous to deny them access to knowledge of a major part of my life, particularly if it's something I want to become politically involved in at some point, but I know it will be hard to let them know.
Still, there's good news. My cholesterol level means I am going to have a lower risk of heart problems, contrary to previous advice and my dentist tells me there's no evidence whatsoever of opportunistic infection in my mouth, so there's nothing to worry about just yet. Also, I don't have CMV or toxoplasmosis in my system, like 50% of the population, so that's two fewer things to worry about.
Telling friends I'm cool with, if they're friends, they'll be okay with it. Telling work just isn't going to happen, because I'm freelance, so it would be very easy for people to decide not to book me rather than blatantly discriminate against me. I'm not actually protected by the change in law, except against my direct employer and that's me, so that's not really going to help a great deal, but I suppose it will help some other people.
I've told a few people recently, though, a guy who I have messed around with a few times and felt guilty for not disclosing now tells me he's in a serodiscordant relationship so serostatus isn't an issue. I think anyone who uses words like serodiscordant is probably good to know. I told another friend, who is a scientist, who then told me he can give me heaps of advice if I do start therapy, another friend just looked sad for me, but that's also allowed. I'm not a sci-fi superhero for the virus I carry within me, it's still not a good thing to be, so yes, sadness is an appropriate reaction when being told someone is positive.
But I can only be sad for myself for so long. After sadness comes defiance, resignation and anger, but all in good time. I have plenty.
Tuesday, December 06, 2005
Think It Through
It's not the end of the world, I know that, it's just a bit of a jolt. My friend still loves me, my friends at large still care. It certainly makes some sense of the overactive metabolism, the weight loss, the night sweats I've had since diagnosis. I've got a dentist's appointment tomorrow, where I'll ask her to look for any evidence of opportunistic infection in my mouth and if there is any, I'll go to the doctor I like the most out of the ones at the clinic and say to her not to worry about confirming the result, but start talking medication.
I Am Disabled
Previously, people who are HIV positive were not protected by the Disability Discrimination Act on the grounds that the virus in and of itself didn't constitute an illness or disability that prevented a person from carrying out normal everyday tasks, but once someone was ill as a result of the infection, then yes, they could say that they were disabled by their illness, but while they were well, their employers could fire them for being positive, could deny them promotions and spit at them in the street on the way to work, as well as any other humiliating treatment they felt like dishing out to us vile positive people because, hey, we're so dirty and it's our fault.
Well, it looks like the DDA has finally gained some concept of the notion of the Social Model of Disability, whereby it's not that the person with a disability has a problem, it's that society fails to provide what is needed by those people. For instance, wheelchair users aren't disabled by their legs, but by the lack of adaptations for their wheelchairs. In a similar way, finally, HIV positive people are disabled not by the virus that resides in their blood and their brain, but by the shocking stigma branded upon them by "Them" - those people who don't have this little parasite.
I think this will make disclosure in the workplace more possible, since it also means that disclosure is bound by the same confidentiality requirements as the disclosure of other disabling conditions.
I do wonder, then, if this now means that HIV+ people will be able to claim Disability Living Allowance, because that uses similar terms to define disability. It might be worth attempting to claim, since it's an entitlement that isn't dependant on financial circumstances or on inability to work. However, it's very much based on ability to carry out day-to-day tasks, so I don't think that's a winner, unless they also shift more towards a social model.
Well, it looks like the DDA has finally gained some concept of the notion of the Social Model of Disability, whereby it's not that the person with a disability has a problem, it's that society fails to provide what is needed by those people. For instance, wheelchair users aren't disabled by their legs, but by the lack of adaptations for their wheelchairs. In a similar way, finally, HIV positive people are disabled not by the virus that resides in their blood and their brain, but by the shocking stigma branded upon them by "Them" - those people who don't have this little parasite.
I think this will make disclosure in the workplace more possible, since it also means that disclosure is bound by the same confidentiality requirements as the disclosure of other disabling conditions.
I do wonder, then, if this now means that HIV+ people will be able to claim Disability Living Allowance, because that uses similar terms to define disability. It might be worth attempting to claim, since it's an entitlement that isn't dependant on financial circumstances or on inability to work. However, it's very much based on ability to carry out day-to-day tasks, so I don't think that's a winner, unless they also shift more towards a social model.
Fuck.
After having done my research and thought that I would have a few years before I had to even think about getting medical intervention, my doctor just phoned me to let me know my results. My CD4 count is half that it was at my first test and my viral load is more than 3 times what it was. The viral load change isn't significant, but when CD4 attrition is usually about 40 points in a year, to go from around 520 to 280 within 4 months doesn't bode well at all for me. I'll get retested in the new year to confirm, but it does mean a very harsh decision for me to make about state intervention in my life and what that means for my prognosis.
And there was me telling my beloved friend none of it mattered. Suddenly I'm the one frightened and uncertain and he's the one heading home contentedly and I'm still so certain there's no difference between us? Fuck.
And there was me telling my beloved friend none of it mattered. Suddenly I'm the one frightened and uncertain and he's the one heading home contentedly and I'm still so certain there's no difference between us? Fuck.
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