The cranky queer’s guide to chronic illness

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HIV/AIDS writer and activist JD Davids
HIV/AIDS writer and activist JD Davids
Positive Thoughts

Hello. How are you? Yeah, you’re fine, I know. So am I.

It’s the kind of fine where it’s the third time in four days that I wake up at 2:30 am. And no, it’s not Trump — or not just that. I’m sick, and in physical pain, and my heart is pounding and my mind racing.

Given that it’s a familiar routine at this point, I know I’ll lie there for a while trying to remember what the somatic therapist said I could do in these situations. Then, I’ll spend awhile trying to do it. That is, hold one hand at the base of my head and the other on my forehead to reassure my nervous system and contain my anxiety. Then, welcome and reassure the scared parts deep inside me and seek to learn from them rather than to shame or banish them, and . . . well, I can’t remember the rest at the moment.

“At the moment,” at this moment, means 3:34 am. After a while, I did remember one of the very best pieces of advice I’ve obtained in the past several years. It’s from an email marketing list about insomnia: Just get out of bed and give up trying to sleep.

The Cranky Queer’s Guide to Chronic Illness

And that caused me to remember another thing I’d forgotten. Standing up is often less painful than laying down — by the time it gets to the middle of the night. I thought my joints hurt too much to type, but here I am. I am working at this Ikea-hacked standing desk to tell you about a project I pledge to move forward as of today: The Cranky Queer’s Guide to Chronic Illness.

Because, when you’re in another doctor’s waiting room, on long phone hold with your health insurance, or lying in bed not sleeping, what passes the time better than pretending you’re just here as an imbedded unhealthy journalist. I am capturing the Top Ten Tips?

Care to contribute? No matter what our ages, I know my fellow illders. illders is a combination of two words — illness plus elder! I made it up! I’m cranky but clever! We hold much wisdom and a hell of a lot of tricks and tactics for getting by with the multiple challenges that come from being sick, or from doing a hell of a lot to stay well.

Many of my long-term HIV surviving comrades, cranky or otherwise, are dealing with health consequences from living with HIV before effective treatment was available. And there’s the deep impact of going through and witnessing so much suffering and loss. Now, many people with HIV are facing comorbidities. There are problems that fuck up our health and well-being. Many are in or 50s and 60s. We are dealing with comorbidities that aren’t usually seen till people are older.

Trauma makes bodies precocious

Others of us, with or without HIV, have a raft of autoimmune or other health problems. Some problems may or may not respond to expensive medications. Many can bring another bundle of side effects and insurance headaches along for the ride.

Social and economic factors put people in harm’s way when it comes to chronic illness and the consequences of ill health. It hits hard in communities of color, in immigrant communities, and among others who are subject to the most systemic bias and administrative violence (a term spelled out by trans activist Dean Spade in his book Normal Life — check it out, if you haven’t already).

The authors of the study Minority Stress and Physical Health Among Sexual Minority Individuals sum it up thusly: “Prejudice-related stressful life events have a unique deleterious impact on health that persists above and beyond the effect of stressful life events unrelated to prejudice.”

And violence and stress is huge for trans people, particularly trans women of color. Although we’re starting to see glimmers of hope for something approaching competent health care for trans people, it’s going to have to address a lot more than gender-related care, given the health consequences of trauma, pervasive stigma, violence, and economic marginalization.

So, here we are: 4:18 a.m. Now what?

ACT UP had a cross-chapter caucus called PISD – People With Immune System Disorders. There’s not much documentation of what it did, and mostly what I recall about it is Kiyoshi Kuromiya, one of the leaders of ACT UP Philadelphia and a consummate practitioner of intersectional organizing for decades, wearing the purple t-shirt with the name. But I believe the basic idea was that a lot of us have common cause in fighting for better care and helping each other make it through.

Maybe it’s time to bring PISD back. Or, we could call ourselves something that adds up to the acronym INFLAME, as these days, it’s recognized that inflammation may be the secret sauce that links us across serostatuses, medical sub-specialties, and rejected insurance prior-authorizations.

I’m OK. I’m actually in a really good situation. In addition to the race and class privilege I carry, I have a flexible job where I can work from home. I get paid well, and have pretty-good-if-not-great health insurance, as well as other helpful benefits and accommodations.

We gain a lot when we are there for each other

And it’s still really hard. It can be perniciously isolating to be an illder. We gain a lot when we are there for each other.

We are comparing notes on the best ways to navigate lousy urgent care storefronts when we are too sick to travel an hour to get to the provider for yet another round of antibiotics. Or worse, when we need to make sure the latest symptoms aren’t truly dangerous.

We are sharing strategies for juggling pain meds and the need to function.

We are resisting the tyranny of self-care, in which it’s all too easy and terrible to feel as if we’d be better if we just did more of it.

Sometimes, we’re just bringing each other a snack in person or sending digital compassion and understanding when we’re far from each other. And, sometimes, we’re still fighting like hell for one of us to get the expensive treatment we need that’s been rejected, again, by insurance — or to get it covered when insurance isn’t even an option.

I’ve learned some things in all this. I think you have too. We’ve got a lot to talk about; we can help each other through. And, it’s OK to be cranky.

HIV activist JD Davids
HIV activist JD Davids

JD Davids is a senior editor and the director of strategic communications at TheBody.com and TheBodyPRO.com. This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service.