no matter how I word this

it’s gonna sound “wrong”… bitter, selfish, bitchy…

As you know… (because every blog, message board and avatar is PINK!)… October is Breast Cancer Awareness month. I love how people get involved and participate so whole-heartedly at great length. I love the “manly men” at rodeos, football games, Nascar races buck up and wear the color usually saved for little girls, sissies and queer bois. But, ya know… I’m a little… hm… concerned maybe is the right word. Frustrated. Irritated? Pissed off isn’t the right term… but I’ll be damned if I can’t think of how to describe what I’ve been feeling. Let me see if I can explain.

I told a long time “internet” friend of  mine over the phone a week or so ago about my diagnosis. We’d gone through our weight loss surgery’s together. She’d had a blockage/twist in her gut and had to have part of her.. i dunno… intestines, colon (do women have colons? must go google that!) removed and spent a few days in the hospital for emergency surgery. This was all soon after my hospital visit in 2007. I’m sorry, Jodi, if I have that wrong… forgive me… my memory is for shit lately.

Earlier that year she’d come out to California from Pittsburgh, Penn and we did a weekend at North Lake Tahoe. There was a group of us, but she and I had some bonding time and our friendship was special. When I gave her the news, she was surprised yet still supportive… honest when she didn’t have to be and shared some stuff with me that made me not feel so “out there”. But one thing she said has haunted me since our phone conversation… “HIV? AIDS? That’s so 1990’s!”

It’s true… people DON’T talk about HIV and AIDS anymore. People use condoms so they don’t get herpes, syphilis or pregnant… not because they might get AIDS. Most of the gay boys I know use condoms every time, or at least put off the vibe that they know they need to be safe. It’s just the norm (thank goodness). Needle exchanges are no longer a much publicized issue.  Even in Law Enforcement and Public Safety, more people are concerned with the Hep’s than the HIV.

People joke about “Swine Flu Monkey AIDS”…  When I was still trying to figure out what was wrong with me, a lot of people laughed and jeered “OH NOES! YOU GOTZ DA’AIDZ!”…. and I would laugh right along side them thinking “NO ONE GOT AIDS ANYMORE! chuckle chuckle, ha, ha, THANK GOD I TESTED NEGATIVE lawz!”

Except I’m not negative. Ya… my body doesn’t create the antibodies that show up in tests, so all that time I assumed I was negative… but I do have AIDS… I am HIV positive… and it could be a year before my numbers get me to a state where I can say I’m “just” HIV positive.

If that part doesn’t make sense… I’ll try and give you a Readers Digest version of how I understand it. AIDS is like an everyday cold… you have it when you show symptoms of it. It can come and go and will come and go… sometimes it will be mild, like a case of the sniffles and a sore throat… other times it will be “up all night with a hacking cough and fever”. HIV patients have AIDS when their numbers are skewed, but more often they show symptoms of opportunistic infections. See… learn something new every day.

Anyway… back to the beginning of my post. I’m all for supporting Cancer Research. I hate that people get Cancer. I hate that those who have to live with it are having to deal with icky treatments. I hate that those left after someone looses the fight have to live without their loved ones. I hate the Cancer.

But, and this is where I feel selfish, I want the awareness of HIV and AIDS to get the same support. the same love, as Cancer, without judgment… I have a red ribbon on my twitter avatar and I’m sure no one has ever noticed it. But if I were to start a huge campaign regarding my disease… I just don’t feel it would get the same support as Cancer. That makes me sad.

I don’t want people to have to choose… please don’t get me wrong… but I want the Susan G. Komen foundation and the Ryan White foundation to get equal press coverage. I want people to know that HIV and AIDS is out there, still... and it can “hide” in your body for 8 years without showing any symptoms… I want people, no matter what their sexual preference or assumed commitment status, to get an HIV test yearly… just like a mammogram.

I know right now if I started campaigning for HIV/AIDS research strongly, as strongly as some of my peers do for cancer, people would put two and two together… and the judging would start. “She was kinda slutty there for a bit…”, “Remember how drunk she was getting all the time after she and so-&-so split up?…” People will question if I used drugs… if I was into, dare I say, anything deviant. The only thing that won’t come up, is if I’m a gay man… but people will wonder if I was ever with a gay man… it’s already been questioned… and the answer to EVERY SINGLE ONE of these questions is I don’t know. I don’t know who gave me this… and whoever it was… obviously wasn’t all that honest with me about his past… so I won’t ever know… all I know is I have it… and I want the vaccine out sooner than later. I’ve accepted there is no cure… now let’s work on stopping it from going forward.

How do I do that? Do I swallow my pride and just… do it? It’s something I’ve been thinking about. Every time I see a pink ribbon or a request to sponsor someone in a Cancer walk… a tiny voice inside me screams “what about AIDS?”… and I need that voice to shut up.

This isn’t a contest… this isn’t a race. That disease and my disease aren’t better, worse or for that matter much different. If caught early and treated… those diagnosed can live a long, healthy life…

That being the case, how do I “get over” feeling jealous that Cancer is getting more support?

And, obviously, this is one of those posts I probably need to print out and show a professional….

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12 Comments

  1. Well, of course I cannot judge other countries but here in Dutchyland the HIV/AIDS movement is very big and over here I don’t think it’s getting less support than cancer causes.

    Also I can’t judge the situation you are in, because I am not and never have been in anything like it, but I can imagine you feel this way, being in this situation. I guess, maybe even cancer sufferers have it as well, comparing “their” cancer to other more publically known and supported cancers… I have no answer for this one… I just wish everything could get equal attention, but alas, that is not the way it works, I guess.

    • part of me considered moving back to Europe… just because it’s so different, and not such a big deal.

      I suppose if I started living my life for me instead of the disease I have… it might be easier.

  2. I’m still in shock. And sitting here thinking how awful that I didn’t keep in touch. Keep updated. That I wasn’t around to give you support. What kind of friend am I? Because your disease is all about me, yo. I cannot imagine what you’re going through. What strikes me is what an amazing story you have already, though you’re just starting to fight this enemy that has been unveiled. An inspiration! You’re an inspiration. And your story will inspire people to get tested. To support the cause. And to pay attention. Because if it can happen to you, it can happen to me.

    • I ran away… from everyone… not just my online friends… my real life friends in the city, my closest friends who I loved like family… I wasn’t answering phone calls, I wasn’t replying to emails… I disappeared.

      I guess it’s part of the disease, or they say. Some days I think “they” just say things so we don’t look like giant A-holes.

      Thank you for your kind words… and that’s exactly what I want people to realize. This can… and has… happened to a perfectly “normal” person!

      I’m finally

  3. I think what bothers me the most is that no one should HAVE to be tested yearly for this disease. We should be able to have testing done the way they say we should have it done and deal with it one way or the other. Something needs to be changed clearly in the detection of this.

    I think the HIV/AIDS campaign is still just as prevalent in most areas. It just gets shadowed by all the gajillion new cancers people are dying from.

    That and David Letterman sleeping with staff. 😉

    Hang in there girl. I hear your points and I agree.

    • I hope it is more out there than I realize… that would make me feel better…

  4. I think your feelings are perfectly normal…we all have them (different things, different levels), and they are normal. There are still movements for HIV/Aids (I heard more around the time of Michael Jackson’s death because he supported it), but I don’t see them as often, you’re right.

    Whether or not YOU decide to bring more awareness…I’m afraid that’s something only you can decide. Best of luck with your decision…((hugs)) & prayers.

    • I guess maybe I’m just not seeing it… maybe I should be looking harder!

  5. I got nothin babe! I haven’t seen anything on HIV research around here in a long time, but I do live in BFE and that is the way it is. Lovin ya is all I can do!

    • I actually saw a dosomething.com ad on VH1 this morning… progress!

  6. I’m right with you. Only, I’m jealous that they don’t talk about pancreatic cancer very much. It needs more attention so that they can find a cure. They can already cure breast cancer. If you’re diagnosed with pancreatic cancer, it’s pretty much a death sentence. And the dying ain’t pretty either. Purple is the color for pancreatic cancer and I’m thinking of getting purple streaks in my hair for Pancreatic Awareness Month, which is November (which probably hardly anyone knows). BTW, I did notice your ribbon. I was a little surprised that you put it there.

    • I had a friend who lost her battle with Pancreatic Cancer 2 years ago… she was diagnosed at 23. Lived only 3 years after her DX. Horrible disease.

      I’m with ya… I guess I just get “jealous” that certain cancers and diseases get more hype… I wish there was a “cure what ails you” campaign…

      “choose your own disease”… doesn’t really market well, I suppose


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