#hiv ally
The folks over at transhousingnetwork asked me to write something about how to be a good roommmate to someone living with HIV, so I did!
As has previously been noted on this blog, I am a trans woman who has been living with HIV/AIDS for eight years, which puts me somewhere between “treatment naive” (as they say) and “long term survivor.” Still, I live in New York City, which is one of the most competitive housing markets in the US, and I think eight years is long enough to have learned a thing or two about this stuff. This is extra-long for a Tumblr post, but if I may be so bold, I think it is full of good info for anyone who cares about someone living with HIV.
When I mentioned writing this article before to a friend, they were like, “Being a good housemate to someone living with HIV/AIDS? That sounds like a no-brainer. Just like, don’t be weird about stuff.” Were it that simple! Often, people with HIV/AIDS have special housing needs that you might not realize at first glance, so PartyBottom is here to tell you all about ‘em. Of course, this is not an exhaustive list, merely a start to an ongoing conversation, so if there’s anyone out there who has anything to add, please do message me and let’s keep the ball rolling. (Also, most of my knowledge comes from a US perspective – I am interested to hear what it’s like in other countries, too.)
HIV+ PEOPLE ARE MORE LIKELY THAN HIV- PEOPLE TO RECEIVE SOME KIND OF GOVERNMENT FINANCIAL ASSISTANCE. THIS MAY IMPACT HOW THEY PAY THEIR RENT, AND HOW THEIR LIVES ARE STRUCTURED OVERALL. YOU SHOULD BE OKAY WITH THAT AND PREPARED TO DEAL WITH THE REALITIES THAT COME WITH IT. I cannot stress how this changes a person’s life, your shelter and other basic needs being tied to the whims of various state apparatuses. The #1 thing that people living with HIV/AIDS need help from the state with is paying for their medicines, which can *easily* cost between $30-50k per year. Many people living with HIV/AIDS (hereafter in this article abbreviated with the common but unpronounceable acronym PLWHA) receive help with meds through a federal program called ADAP (the AIDS Drug Assistance Program) which may cover the cost of meds (maybe only HIV-related meds, maybe most meds, and maybe some doctor’s appointments. Where I live in NYC, it has even covered my hormones.) Many PLWHA are on Medicaid, Medicare, food stamps/EBT, pubic assistance/welfare, Social Security Insurance/Social Security Disability Insurance (SSI/SSDI) or may receive some shelter grant through a federal, state, or municipal program.
(And of course, some PLHWA have “normal” jobs with “normal” benefits and “normal” incomes and do not have to deal with these institutions – or may not, for now. More on that later.)
HOW DOES THIS ALL SHAKE OUT IN A ROOMMATE SITUATION? WELL, LET ME TELL YOU. Say you post a housing ad on Craigslist. $400 room available, must like cats, queer/trans friendly house! And say you get half a dozen replies, and narrow it down to two candidates whom you like. The first one says, “Oh, you know, I’ve been working and saving up money, I can put down a deposit and pay you three months rent in advance.” The second one says, “Here’s the deal. I am trusting you enough to tell you that I am HIV+, and enrolled in a program that pays my rent. We will need to fill out several forms together – maybe several rounds of forms together – and I will need utility bills with your actual names on them, and we may need to get the landlord involved and get a utility bill with her name on it, oh, and by the way, these programs are slow and bureaucratic, and I may not be able to pay rent for the first month (or two), but I can petition for arrears, and I am sure, absolutely positive (ha ha) that I can pay that back rent and all future rents and pay it on time, and one this all gets rolling, you will be issued a check in your name every month like clockwork, and at least in that regard I will be the best roommate ever. Oh, and by the way, a government social worker will be stopping by to snoop around a bit every two months, but she is actually not so bad and it will be nbd, I promise.”
WHO WOULD YOU CHOOSE? This is where the social justice rubber hits the road.
Now, say you did a good thing (moreover, a *legal* thing, as – in New York City anyway – it is technically illegal to practice housing discrimination against someone based on their source of income, though in reality people do it all the time) and have decided to join up and be roommates with someone living with HIV, and who, for the sake of the narrative, is enrolled in a housing program and other forms of government assistance. What are some sticky situations you might expect? Well, here are a couple:
IT IS NO ONE’S RIGHT TO DISCLOSE ANYONE’S HIV STATUS BUT THEIR OWN. There is a real parallel here with being trans. Some trans people are OUT OUT OUT about being trans – and that’s great! – and other people are super stealth and don’t want anyone to know about it. It is sort of the same with HIV.
I was diagnosed sort of at the end of the era in which the common social work wisdom was to advise newly-diagnosed clients NOT to run out and disclose their status to everyone, even to their closest friends. “You cannot unring that bell,” was the common phrase, and frankly, it’s true. I have heard heartbreaking stories in which someone told her close friend that she was positive, who told her neighbor, who told the woman’s sister, and from then on, the HIV+ woman was never allowed to hold or touch her baby niece again, out of fear that she would somehow “contaminate” the child. People’s HIV+ status – not unlike the fact that someone is trans – makes good and potentially deadly gossip. It is not something that people easily keep to themselves.
FOR INSTANCE, say your roommate seems not to be doing much. Like, if they are caught up in the HIV/AIDS industrial complex, they are probably consigned to a life of subsistance poverty, so it is likey that they may have a little side hustle to afford things that most normal people have (like, say, a cell phone! or shoes that don’t hurt your feet! or whatever!) Maybe they cut hair for cash. Maybe they deal a little weed. Maybe they work under the table at a food truck. Maybe they play music and busk on the train. Odds are, they may have a life that appears improbable to the outside world.
What if someone is making chit chat with you at a BBQ and is like, “So, how’s living with PartyBottom working out? What does she, like, do all day exacty? Oh, really? Does she make enough money doing that?” A pretty naive answer might be, “Well, she does make some money, but she’s also enrolled in this city program called HASA that pays most of her bills.”
The thing is, if anyone knows what HASA stands for (the New York City welfare department’s HIV/AIDS Services Administration), then like, boom, they know that PartyBottom is positive. And if they don’t know and they Google it, same deal.
That is a casual, just kind of doofus-y goof. Things around disclosure get a little more tricky when you realize that HIV+ PEOPLE ARE SEXUALLY ACTIVE, AND IN GENERAL, THEY ARE RESPONSIBLE ABOUT IT. IT IS *NOT* YOUR RESPONSIBILITY TO “WARN” ANYONE ABOUT ANYONE ELSE’S SEROSTATUS.
Say your roommate brings home a hook-up from a party. You might hear all kinds of grunts and groans coming from their bedroom. Your HIV+ roommate may or may not choose to disclose their serostatus, based on the level of risk involved in the hookup. Maybe their new friend comes over three or four more times! It might be tempting to say something like, “Wow, it’s so cool of you not to stigmatize PartyBottom as a sexual partner for being HIV+,” or even something more innocuous, to that effect. But maybe all they were doing in there is like, sexydirtytalk brother-and-sister role-play with lots of mutual j/o (hottt, imho)! And as such, maybe someone like PartyBottom would feel like, since they barely knew the person, and this is just a no-high-risk-fluid-exchange nbd fwb sitch, that their new sexxin’ buddy really didn’t need to know all about sero status, have to have a loooong convo about health and feeling and etc etc etc.
People living with HIV know better than anyone else the right time and place and circumstance to disclose matters of their own health. This is not your job. On a number of instances, PartyBottom has started to date someone and a third party has inserted herself into the conversation, to let the object of her affection know about her serostatus before the time was right, out of “concern.” (Man, this is a whole other article.) Anyway, don’t do this.
PLWHA are often stigmatized as “AIDS monsters” who run around trying to infect people at every given opportunity, but both my IRL experience and all the public health data do not bear this out. (Most new infections are between people who do not know their status.) There *are* some (a very small minority) people who know they are HIV+ who intentionally infect others. Some of them are in very desperate circumstances and have had to make terrible choices. Some number of them may be practicing some form of sociopathy. But, if you are living with a sociopath, you’ve got bigger problems than this article can accomodate.
Moving right along,
PEOPLE LIVING WITH HIV/AIDS MAY HAVE SPECIAL PSYCHOSOCIAL NEEDS. AS A GOOD ROOMMATE, IT’S ALSO YOUR JOB TO BE A GOOD FRIEND. Drug companies love to showcase PLWHA as being superhuman – if you live in a city or a neighborhood or read magazines where HIV meds are advertised, it is not unusual to see depictions of PLWHA running marathons, raising families, being in modern dance troupes, and generally having the time of their lives. And sure, lots of PLWHA are out there living their dreams – even PartyBottom, in a various attempts to reassure worrisome people that she is OK, jokes that she has “the Magic Johnson AIDS” – i.e, on meds, low viral load, good CD4 count, low side-effect profile. And, to an extent, that is true. But there are not-so-good days as well.
Life with HIV can feel lonely and sad sometimes. Depression is always kind of knocking on your door. Lots of people – HIV+ and HIV- – feel this way, and everyone copes with this differently – and having nice friends around to shoot the shit with over a cup of tea or a beer is a great coping mechanism.
More specifically, depending on when a person was diagnosed, and what particular strain of HIV they have, they may be on meds that are hard to take, and which have physical or neurological side effects, or physical side effects that lead to emotional side effects. For instance, Atripla, the much-touted “one-a-day” pill for HIV, contains a compound called Sustiva/Efavirenz, which is notorious among treatment-experienced PLWHA for its neurological side effects: depression, nightmares, disorientation, hallucinations. But, it is often pushed on newly-diagnosed patients because physicians think we are all really dumb and cannot manage our lives and so a one-pill, once-a-day regimen is like, the most complicated thing we can handle. So, say you’re living with a housemate who is newly diagnosed, or a housemate who has been diagnosed for a while, and they have a meds switch-up: they might start acting weird. Be gentle, but talk to them about it. Encourage them to talk to their doctor about alternatives. They are out there.
(A brief counter-example of how to be a NOT good housemate to an HIV+ person: when I first started Atripla, a subletter was living in my house who did not know I was +. I had a SEVERE histamine reaction to Sustiva, and my entire body broke out in scaley red sores – like I had chicken pox or something. She was like, uh, what’s going on? And, because I thought I could trust her, I told her the deal: that I am HIV+, and that I was having a reaction to a new medication. She freaked out. She said, You know, this is the kind of thing you really should tell someone before they move in with you. This is all very triggering for me. You know, my uncle died of AIDS in the 80s and I really think it was the source of my family’s homophobia. This is just bringing up a lot of stuff for *me* right now. Meanwhile, my skin was on fire. So like, don’t say shit like that.)
(Also I think it would be irresponsible of me not to note this: if you have been prescribed Atripla, or any combination of drugs with Sustiva in them, don’t freak out. My doctor at the time sold it to me like this: “You know, some people kind of enjoy the neurological side effects. They say it’s kind of like smoking pot. They take it before bed and it helps them sleep better, and they like the dreams. Sometimes it means more sexy dreams!” And many people experience no side effect profile from this drug at all. The point is, if you (or your friend/roommate) is having trouble, talk to a doctor, sooner than later. And if they don’t take your experience seriously, find another doctor who will, if you can.)
A few other short points:
QUIT MOVING SO MUCH. It has been noted that queers tend to occupy dwellings for shorter times than “traditional” families, seniors, etc. This is bad for neighborhoods in general (rapid real estate turn over makes it easier for landlords to jack up rents, gentrification happens, etc) and it is particularly bad for people living with HIV, because often their shelter needs are often tied to state bureacracy, which does not respond well to quick change. Deciding to move because you “need a change” or “don’t like the energy” of a place could very well leave someone living with HIV in a serious housing crisis, or even homeless. When you decide to make a home somewhere, ask yourself: can I see myself living here for five years? Ten years? The rest of my life, maybe, even?
CONTEMPORARY HIV IS AN EPISODIC ILLNESS. SOME DAYS WILL BE BETTER THAN OTHERS. For PartyBottom, personally, there are days (and, occasionally, weeks) when the fatigue hits and it is overwhelming. I have gotten and lost “real jobs” because of this. Most people with HIV – and most people in general – will not be able to work at some point in their lives because of illness or disability.
For me, I know the fatigue will pass eventually, and there are things I can do to alleviate it/keep it at bay, but mostly, I worry about worrying my roommates. I worry that they’re thinking, “Is she okay? Is everything alright? Do we need to do something?” The worry that my roommates think something is wrong with me is sometimes worse than whatever is actually wrong with me.
And sure, sometimes people get more seriously sick. Occasionally people end up in the hospital. But just realize that there will be ups and downs, and that it is your roommate’s responsibility to be honest with herself and you about how sick she or he is in fact feeling, and that no matter what happens, you will all get through it, together. (And maybe, if they request it, be prepared to be your roommate’s emergency contact.)
PEOPLE LIVING WITH HIV HAVE A LOT OF APPOINTMENTS TO KEEP. MAYBE BE A BUDDY AND OFFER TO GO WITH THEM! Doctor’s appointments, social security appointments, welfare office appointments, holistic health appointments, mental health/therapy appointments, etc etc etc. If you have time, and the inclination, going with someone to their appointments is a nice thing and will more likey than not help keep the household running smoothly. If you are a pal and go with your friend/roommate to the welfare office, it is more likely that they will keep those appointments and the checks will keep coming and the house will run smoothly. Speaking of which,
BE PREPARED TO DEAL WITH CERTAIN FEELINGS OF RESENTMENT THAT COME FROM LIVING WITH SOMEONE WHO RECEIVES PUBLIC ASSISTANCE. In certain cities, the benefits package offered to people living with HIV (slang term: “the kitty”) might at first glance seem quite generous. It is easy to look at someone in this situation and have surprising feelings of envy! Especially if you are scrambling to make ends meet. “Man, it’d be nice to be able to do anything I wanted all day, and not have to worry about rent or health care,” you might find yourself thinking. It’s easy for resentment to build up, and for that to start expressing itself in subtle ways. “Well, PartyBottom is on EBT, so maybe she can start buying more of the groceries we share, since she’s not, like, *actually* paying for them.” This kind will start stressing everyone out very quickly. Try to deal with these feelings, either by talking to a friend or therapist, or meditating on them, or – if you are very emotionally close to an HIV+ person – expressing them in the context of, “I know this might seem unfair, but I am having this feeling. I need to talk about it.” Having feelings is okay. Being mean to people because of them are not.
(Also, realize that your feelings have been manipulated by a decades-long US corporate anti-welfare mass media campaign. You have been programmed to hate welfare. It’s kind of your job to do the work to deprogram yourself of this, but again, this is another article.)
UNDOCUMENTED PEOPLE’S STRUGGLES WITH HIV ARE EXPONENTIALLY HARDER, but in certain cities there are certain programs that will help them at least have access to meds and basic health care. This is an extra-tough situation, but people live it every day. Somehow, people make it work. Some people (documented and undocumented) sell their meds in order to make money to survive. This is an intensely personal decision that you cannot judge unless you have walked this path, so reserve your fucking judgement.
This might be a good example of when communal living structures where everyone contributes a fixed percentage of their monthly income to the entire rent, instead of everyone paying evenly or by square footage, might be a good and humane way to live. If you have more, offer to pick up the slack for those who have less – maybe one day they will do the same for you. (There are models of these kinds of living structures buried in trans history: STAR house and Transy House, both here in New York, worked this way to one degree or other and Reina at thespiritwas has done some excellent research on this.)
IF YOU ARE A LOW-INCOME PERSON, AND YOU ALSO QUALIFY FOR PUBLIC BENEFITS, GET THEM. There are all kinds of reasons why people put off getting benefits who need them: shame, guilt, fear of interacting with the state, general flakiness. But if you find yourself running short of cash each month, or not having enough to eat, or needing health care but being unable to access it, AND you qualify for programs to help you alleviate any or all of the above, please do everyone a favor and buckle down and make it happen. It will make the house run smoother, it will take the burden off of your (quite likely already impoverished) HIV+ roommate to save your ass. And, hmm, how to put this: when whether you live or die is tied to the state and its bureacratic machinations and your ability to navigate them, it is somewhat frustrating to hear your roommates make excuses as to why they cannot get their act together to figure out how to get fucking food stamps. Maybe that’s unfair. But also, I look around me and think, okay. This is not rocket science. You can do it, and I will help you, but you have to take it seriously and roll your ass out of bed and get to the welfare office. We can even do it together! And it will make our lives together so much easier! But you have to kind of be like a pit bull to get some of these services: sink your teeth in and never let up.
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I know this has been a long article, but if I had to tl;dr it (which I am hesitant to do but it’s tumblr so w/e), the main take away is this: as queers, we need to take seriously our commitments to caring for one another. It is not always easy. It *can* be fun. But it is crucial.
It is how we survive.
It is how we have always survived.
