Symptom: Guilt that a treatment is working.

When I was trying to wrap my head around this new experience, I learned about AIDS Survivor Syndrome. As I’ve referenced in earlier pieces, and said in interviews, I often find kinship as I learn more about the HIV/AIDS pandemic. I see highly politicized, post-acute viral illnesses, which disproportionately impact queer people. I see pandemics which are ongoing yet treated as finished, and have their important social supports are threatened or dismantled.

It’s important to note that my Long Covid has not jeopardized my life explicitly, and there are differences in how these illnesses are/were stigmatized. And yet I think this kinship matters less to me in easily defined traits than in the murky, isolating ones. Chronic illnesses don’t always fit in sick/healthy or get better soon/terminal dualities. There’s a wide range of symptom presentations and severity in Long Covid: from the people who have it for a few months and recover, to those of us whose illnesses are expected to be lifelong. Even for people who have “mild” Covid and “fully recover” without Long Covid, there are increased risks to their hearts, brains, lungs, and more, regardless of age.

And perhaps most on-theme for this blog, the overlap of these two pandemics mean we can create our own version of the art activism which changed the course of the AIDS Pandemic, and we should.*

* email illmarks @ nyx mir . com if you want to make a long covid ACT UP together

I was glad to learn this weird feeling was not just me, and it might also be someone reading this blog’s too, so here are a few quotes from Understanding “Post-AIDS Survivor Syndrome”: A Record of Personal Experiences by Stacy N. Broun, PhD. The situations are different, Long Covid today has nowhere near the efficacy of treatments as those for HIV in 1998. The medication which is helping me with the severity of my ME/CFS, doesn’t help with the aggressively chronic migraines, joint pain, and many other symptoms.

I hope that there will be more effective treatments for us, and hopefully this blog will still be around, and if anyone feels some kind of way about having an effective treatment at long last–maybe they’ll be able to end up here and feel less alone.

Some excerpts from Understanding “Post-AIDS Survivor Syndrome”: A Record of Personal Experiences:

• “For those HIV/AIDS affected persons, who have lived past 10 years or so and have been preparing to die, have not been working, have been viaticating life insurance policies, etc.—what happens to those people when they suddenly feel, as one patient put it, ‘sentenced to live.’ I have chosen to call this post-AIDS survivor syndrome.”

• “The good news is that you may live, bringing with that hope, better health, new relationships, and fresh starts. The bad news is that you may live, bringing with it fear of change, fear of loss of support, new responsibilities, and compromised health. It is quite a paradox, one that for many has forced a reevaluation of their lives, sometimes bringing about a severe depression. The fear and uncertainty mixed with hope and the prospect of a long life has produced clinical symptoms of depression in many HIV-impacted patients.”

• “There is survivor guilt; these people have watched friends and lovers die, and now they may not. While feeling grateful, they are angry that their loved ones did not have the same chances.”

This is a lot of what I feel with regard to having a helpful medication for my ME/CFS-like Long Covid symptoms. So many people I know and love, have ME/CFS and have been sick for much, much longer, and are significantly more severely impacted. We have also (CW suicide!) lost many in our communities.

• “One of my patients, a woman, has been through so many wonder drugs that she does not comply with her medications because she does not want to get her hopes up and then have them smashed again.”

• “I was interviewed by Laura Beil with the Dallas Morning News. She asked me […] How can anything that is so clearly good news be met with anything other than joy? My patients talk about living in the world of AIDS and, that if you are not there, you simply cannot understand.”

I think that is another aspect, less so about the specific art upthread, but a larger and more difficult issue. My pocket friends, you are such wonderful company. Most people understand, here, maybe because you are already covid conscious, or because the art is helpful, or something else. I’ve also built a world and literally filled it with hundreds of bodies, each impacted by the ongoing pandemic.

When I muster the ability to go do a thing, most of the bodies I see do not behave as though there is a pandemic. They also do not understand that I am sick, and have very different expectations of me. I often do not have the words or energy to explain either, which furthers the disconnection.

• “As David Levithan wrote in Utne Reader: ‘At first when my T cells went up, I was ecstatic. Then I got scared, because now I have more to lose. I’ve survived the experience of almost dying, then come back as healthy as before. But sometimes I wonder if I have the strength to go through that loss again. Moreover the loss cuts both ways: Even when things change for the better, there’s a sense of loss. As much as I want to recover, part of me got attached to an image of myself as fragile and needy. I was afraid of losing the support I’d gotten being sick.'”

We are not yet at this place in Long Covid and related conditions, and many of us are still indefinitely ill. But when different treatments are effective and accessible, I hope people won’t blame themselves for feeling grief when losing an identity they had no choice but to accept to survive.

“So, where do we go from here. I imagine that everyone with HIV wants answers and direction. Of any population that can deal with these new developments, you can. You have learned to live for today and in doing so, live your future. You have felt less control and lived with that too.”

https://www.illmarks.com/symptom-guilt-that-a-treatment-is-working/