Now they hoped that JJ could handle it

September 20, 2015 8:28 PM

She's 10. She Has HIV. And She's About to Learn the Truth. [SL WaPo]
posted by ActionPopulated (21 comments total)

I've unfortunately had to spend some time at Children's this summer and, while they're doing good work under difficult conditions and the staff is unfailingly friendly and compassionate, it's a hard to avoid thinking of it as a house of horrors if you're a parent. I suspected these kind of conversations were happening nearby just out of earshot, and it's unsettling to be given a specific example.
posted by ryanshepard at 9:07 PM on September 20, 2015 [1 favorite]

So much respect and gratitude for the people who do this kind of care.
posted by Lexica at 9:14 PM on September 20, 2015 [9 favorites]

Great piece.
posted by limeonaire at 11:04 PM on September 20, 2015

Rakhmanina told her that ignorant people sometimes say bad things about those with HIV, and because of this, she shouldn’t tell friends she has it.

Ten is about the same age that I was told that a close relative had AIDS and was dying, and this made me shudder with how close it was to what I was told then. Ten is old enough to understand that some people think stupid and wrong things and that therefore it's a complicated decision about whether you should tell people. Ten is old enough to have an inkling that not being given a choice about telling your friends means that the person telling you isn't completely divorced from those "bad things" themselves. We should be decades past the point of kids having to keep secrets from their best friends about this. It's like they think kids at ten, eleven, twelve don't have real emotional lives yet and should have no concerns beyond not being a target for bullies.

I support not showing her face, not because she has HIV, but because she's a kid and this is a very public story about a very personal subject. But... instead of teaching her to communicate about her concerns with people who care about her, they've taught her to keep secrets. Now, she doesn't talk to them, and what a surprise.
posted by Sequence at 4:27 AM on September 21, 2015 [6 favorites]

it's a hard to avoid thinking of it as a house of horrors if you're a parent

My daughter had to have a fairly routine surgery and two night stay there recently and yes, it's lovely and the people are great, but going to the cafeteria I kept getting turned around only to run into hallways marked "BURN UNIT" and "CANCER CENTER" and I was quite certain that those were not the areas of Children's Hospital that I wanted to wander around in accidentally.

Edit: I should add that the staff seemed so relieved to have a kid on the ward that was not deathly ill. It has to be a special kind of snowflake that goes home at the end of their shift and returns willingly for the next knowing that one of their patients is not going to make it.
posted by The 10th Regiment of Foot at 6:46 AM on September 21, 2015 [2 favorites]

I should add that the staff seemed so relieved to have a kid on the ward that was not deathly ill. It has to be a special kind of snowflake that goes home at the end of their shift and returns willingly for the next knowing that one of their patients is not going to make it.

When my daughter was born, there was significant meconium aspiration and her pulse-ox read low. So they sent her to the NICU, for what ended up being about 16 hours, just to keep an eye on her.

She was 9 lbs, 10 oz. Lrrr wondered why she did not simply eat the smaller NICU babies.

Judging by the nurses reaction, they had a similar thought--"hey, this one's going home fine." They were amazed at having a full-sized baby to care for.
posted by stevis23 at 6:55 AM on September 21, 2015 [3 favorites]

Stevis23, we called those babies the sumo wrestlers! They just looked so giant and chubby compared to our little guys with their rolled-over newborn diapers and skinny legs.

I thought the journalling touch btw was a nice nod to her processing the revelation about her condition. Clearly she has/does talk about this over the five months of the journalist's story - someone got permission to read her journal and talk to her about her feelings with her and then to the journalist, but at that point in the narrative, she's still processing.

And sure, it'd be great if we could all own our painful truths in public but of all the people in the world who should have to do that, a ten year old kid is pretty far back in the line.
posted by dorothyisunderwood at 7:13 AM on September 21, 2015

I had chronic illnesses at that age, and I remember how the other kids used to treat me like some kind of freak. I can't even begin to imagine how much worse it is for kids with a disease that still holds so much stigma.
posted by The Underpants Monster at 7:21 AM on September 21, 2015

I know fully grown men and women, knowing they have HIV and knowing what HIV does, who cannot adhere to medication regimens. I'm not sure how knowing about the specific diagnosis will work for a 10 year old, but I do absolutely agree that she deserves to know.
posted by Sophie1 at 7:24 AM on September 21, 2015

I know fully grown men and women, knowing they have HIV and knowing what HIV does, who cannot adhere to medication regimens.

I've seen this pop up in almost every thread on Metafilter referencing HIV, and I don't understand the point of sharing it other than to stigmatize people with HIV in general.
posted by deathmaven at 7:31 AM on September 21, 2015

It was only briefly referenced in the article, but JJ did not grow up knowing she was adopted until her older sister revealed it to her out of spite. So sad that the information was hidden from her, serving to exacerbate an already traumatic situation.
posted by BurntHombre at 7:32 AM on September 21, 2015

>I know fully grown men and women, knowing they have HIV and knowing what HIV does, who cannot adhere to medication regimens.

>>I've seen this pop up in almost every thread on Metafilter referencing HIV, and I don't understand the point of sharing it other than to stigmatize people with HIV in general.

It may be because of my own experience with chronic illness, but I took it more as a comment on just how damn hard medication regimens are to stick to. I was just approved for a twice-a-year injection that will replace one of my daily pills, and I literally danced about singing Hallelujah.
posted by The Underpants Monster at 7:41 AM on September 21, 2015 [11 favorites]

And dammit, I just realized I forgot my morning pills when I was rushing out the door this morning. Dammit.
posted by The Underpants Monster at 7:52 AM on September 21, 2015 [1 favorite]

Deathmaven - it's true with every disease, this just happens to be about HIV. Also, with HIV, the effects of not taking your meds is less immediately obvious than for other diseases. I know people who can't adhere to their blood pressure regimens, their antidepressant regimens, asthma regimens, etc. but the consequences of non-adherence pop up much more quickly than with HIV.
posted by Sophie1 at 8:03 AM on September 21, 2015 [3 favorites]

I'm on medication that stops me dropping mysteriously dead which is very nice, and being in daily pain, also very nice, and is only about 8-9 smallish pills a day. The side effects are manageable, and these pills replaced twice daily injections and nastier pills.

I still miss dosages and have days where I look at a palmful of pills and my stomach roils and think I hate this I hate this I hate this and I don't want to take them at all. I got mad coping skills and reasons to take them, and it's hard. Acknowledging that these pills represent the acceptance of my fragile mortality, frequent debilitating pain, and chronic illness and that it is okay for me as a human being to be unheroic and rage against the fucking light and be pissed about being sick once in a while, that helps me eventually take the damn pills.

It's not just HIV. Diabetic teenagers are notorious for being unreliable for their medication - ditto asthma and epic-pens. It's mortality and body images and health questions that you have to confront and wrestle with every single day in a mouthful, and that's just sometimes too much. Denial - especially when you're going through a seemingly good spell of health and don't feel sick - is much much happier and easier.
posted by dorothyisunderwood at 8:14 AM on September 21, 2015 [19 favorites]

And sure, it'd be great if we could all own our painful truths in public but of all the people in the world who should have to do that, a ten year old kid is pretty far back in the line.

That's not the point. The point is that the way that this is phrased here, if we take that at face value--and it is almost word-for-word what I was told about my family member--was not "you shouldn't announce this in class". It was, "don't tell your friends." You know, friends. The other kids who, by age 10, you discuss way more personal stuff with than you ever do with your mother. That's not "public".

The message that they're sending her right now is that she has to bottle everything up, and so she's bottling. That "being adopted" and "having HIV" are bad things, and we can't tell the people we're close to the bad things or they'll think less of us. It's like nobody has enough recall of what it's like to be ten to realize how awful it is to tell a ten-year-old girl who already distrusts her parents that she can't trust her friends, either. It's such a social age. If you can't picture it, I don't know... imagine someone telling Harry Potter, age 11, that the kids at his new school might be really awful to him if they find out his parents are dead. They're going to make fun of his scar if they see it. He can't let them know that anything's wrong. Imagine the books without him being able to open up to kids his own age. By book 5, you're to Harry Potter and the Crippling Anxiety Disorder.
posted by Sequence at 9:06 AM on September 21, 2015 [2 favorites]

I want to live in your world where a ten year old can routinely tell another ten year old something as sensitive (and legally difficult even) as an HIV diagnosis and have that handled well most of the time.

But I think it's also - it sounds like you were given just one painful conversation about something really traumatic about your family member and then it just was shut down and forbidden, which is a horrible way to deal with a crisis. Effective short-term, but brutal long-term. This needs to be a series of conversations that change as the child changes and grows into an adult and understands and makes more decisions on their own.

I think you're reversing casualty here. They're not saying don't EVER tell friends. They're saying don't tell friends right *now*, while she's still processing this and wrapping her head around this. Now for a 10 year old who doesn't quite understand this - how is she going to explain this to her friends? How are her friends going to have the experience or understanding to deal with this? If she lived in a community with a lot of HIV+ adults and children, maybe. Or if she was dealing with 'just' adoption, then definitely, plenty of other adoptees to talk with. But this is something that's still a big thing to put on another 10 year old's shoulders as a best friend conversation.

She's got time to decide who and how to tell people, with the support and practical help of her therapist and her family. She's actually in a pretty good place for a kid dealing with serious issues support wise. She can have that conversation, but it needs to be considered and thought out, for her sake and for her friend's sake.
posted by dorothyisunderwood at 9:34 AM on September 21, 2015 [1 favorite]

Even adults who get significant diagnoses (not just HIV and other communicable diseases, this is true of things like ADHD and autism) are encouraged to go slowly on disclosure. From a book I recently read:

Disclosure makes people uncomfortable. Most people don't know what to say. Many will reassure you that it makes no difference and then proceed to treat you differently.… As you think about disclosure, keep one thing in mind: it's irrevocable. Once you share your news with someone, you can't unshare it. You also can't guarantee that the person you've shared with will keep your disclosure private. They may inadvertently or unintentionally "out" you to someone you aren't ready to share with.

posted by Lexica at 10:25 AM on September 21, 2015 [1 favorite]

I've seen this pop up in almost every thread on Metafilter referencing HIV, and I don't understand the point of sharing it other than to stigmatize people with HIV in general.

The article spends a great deal of talking about it. In fact, it sounds like the decision to disclose was driven by the hope of persuading JJ to be more compliant with her medication regimen.
posted by joyceanmachine at 10:45 AM on September 21, 2015 [3 favorites]

A meta aspect of this story is government-supported medicine is doing terrific work! That this kid and too many others like her, kids born into poverty and horrendous challenges, are getting care as comprehensive as medical and psychological knowledge allows. If I read the article correctly, almost a dozen specialists and direct support staff are helping manage her care.

These are our tax dollars at work, folks. While a hard read about the difficulties of one young woman, it is also a piece about the our public health institutions doing not just "the best they can do" - they are doing some of the best care *in the world* one sick, poor child at a time.

Medicaid works. The ACA is going to keep this kid alive (and with her own help, healthy) as she becomes an adult. Publicly-funded adoption found this girl a mother and a family, as imperfect and loving as any family. Public school is educating her, recognizing when she needs help and encouragement.

US government can do all this very, very well. Not perfectly, but well. But only if we fund it and keep it doing what public organizations do best - serving without immediate economic returns.

This is a great article about one person's story reminding us that the public sector and its workers are a ncessary good for all of us.
posted by Dreidl at 1:40 PM on September 21, 2015 [16 favorites]

That is a great point, Dreidl.

I am still thinking of the detail of how the nurses and doctors use different sizes of candy to help the children learn to swallow bigger pills. I am thinking of that child literally swallowing sugar pills to train her up for the ones that have medicine in them. I am remembering that line, "a spoonful of sugar helps the medicine go down," and then I am picturing her struggling to get that Mike & Ike's down her tiny gullet.
posted by brainwane at 10:31 AM on September 22, 2015