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Positive Thoughts

The cranky queer’s guide to chronic illness

by JD Davids

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 I wake up at 2:30 a.m. 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 it’s a familiar routine, I know I’ll lie there trying to remember what the somatic therapist said to do. Then, I’ll spend time trying to do it. To hold one hand at the base of my head and the other on my forehead to reassure my nervous system and contain my anxiety, welcome and comfort the scared parts deep inside 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” means 3:34 a.m. After a while, I did remember one of the best pieces of advice in the past several years, from an email marketing list about insomnia: Get out of bed and give up trying to sleep.

And that caused me to remember another thing: Standing up is often less painful than lying down when it gets to the middle of the night. I thought my joints hurt too much to type, but here I am, working at an Ikea-hacked standing desk to talk about a project I pledge to move forward on: The Cranky Queer’s Guide to Chronic Illness.

Because, when I’m in another doctor’s waiting room, on a long phone hold with my health insurance, or lying in bed not sleeping, what passes the time better than pretending I’m here as an embedded unhealthy journalist, capturing the Top Ten Tips?

Care to contribute? No matter our age, I know my fellow “illders” (it’s a combination of words — illness plus elder, I made it up. I’m cranky but clever!) hold much wisdom and a lot of tactics for getting by with the multiple challenges from being sick, or from doing a lot to stay well.

Many long-term HIV-surviving comrades, cranky or otherwise, are dealing with health consequences from HIV before effective treatment was available. Going through and witnessing so much suffering and loss leaves a profound impact. Now, many people with HIV are facing comorbidities not seen until in their 50s and 60s.

Trauma makes bodies precocious.

Others of us, with or without HIV, have a raft of autoimmune or other health problems. Some of which may or may not respond to expensive medications that 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. And they hit most 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.)

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 are huge for trans people, particularly trans women of color. Although we’re seeing glimmers of hope for 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 I am at 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 leader of ACT UP Philadelphia and a consummate practitioner of intersectional organizing for decades. But I believe our idea was a shared cause in fighting for better care and helping through the difficulties.

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

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

And it’s still really hard. It can be perniciously isolating to be an “illder”. But 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 the provider for yet another round of antibiotics or when we need to make sure the latest symptoms aren’t dangerous. Also, we are sharing strategies for juggling pain meds and the need to function; resisting the tyranny of self-care.

Sometimes, we’re bringing each other snacks or sending digital compassion and understanding when we’re far from each other. And, sometimes, we’re still fighting for someone to get an expensive treatment that was rejected, yet again, by insurance. Or personally cover it when coverage isn’t an option.

I’ve learned some things, and so have you: We have a lot to talk about; we can help each other through. And, it’s okay to be cranky.

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. Visit their websites – http://hivplusmag.com, http://positivelyaware.com, http://poz.com, and http://thebody.com – for the latest updates on HIV/AIDS.

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