"If I became sick... I’ll truly understand how alone I am.”

When it comes to loneliness and isolation LGBTQ seniors lead the pack. Who will advocate and care for this vulnerable community?

By Carey Candarian, 2018 Sojourns Scholar
"If I became sick... I’ll truly understand how alone I am.”
As the Coronavirus impacts more people we’re hearing devastating stories of what’s happening to seniors -- particularly those who live in congregate settings. Seniors living in complete isolation, losing contact with loved ones, or dying with no loved ones nearby. It’s heartbreaking.
 
But what you aren’t hearing about is how much harder this social isolation can be for our lesbian, gay, bisexual, transgender or queer (LGBTQ) seniors. This is a community that was largely ignored -- invisible -- before the spread of COVID-19. But the effect of social distancing on these 3 million seniors has been devastating. 
 
Recently, I conducted more than thirty in-depth interviews with lesbian women between the ages of 56 and 84. We spoke just before and as Colorado was heading into lockdown to prevent the spread of COVID-19. Their concerns are not unlike the headlines: fear of loneliness, fears about having their wishes be honored, and fear of dying alone. 

Here’s what they told me:  
 
"When it comes to loneliness and isolation LGBTQ seniors lead the pack on that as they age. I mean if we lose friends, we're losing the only people who knew who we are. Friends are our only support system."
 
For many LGBTQ seniors, friends become their “family of choice.” Because the family they were born into may have rejected them. Imagine losing your only support system -- the people who knew your true identity and who you really love.
 
“When my partner died, I was just like, ‘Never again am I going to hide, I'm not, I'm just not. There were enough things that happened during her illness, like being told I couldn't go in the ICU.’"
 
Imagine if hospital visitation policies for LGBTQ elders were talked about with as much devastation as those being talked about right now with restrictions to family members entering the ICU. 
 
“One of the things that concerns me is when I can't take care of myself, and our kids can't take care of us – and I'm alone, what the hell am I going to do? I don’t want to die with a bag over my head.”
 
Imagine if dying alone was not your only fear but dying with the tragedy of “having a bag” over your head to avoid discrimination at the bedside was taken more seriously. 
 
“I know you've heard about this from anybody who is older anyway, as far as the community goes, is that frankly, there's always nowhere to socialize.”
 
Imagine if all senior living communities had an LGBTQ social group, like they have a yoga class, and bible study, and flyers could be posted on elevators without residents ripping them off to remind people that LGBTQ elders need community like everybody else.  
 
“I've been diagnosed with chronic depression, PTSD, Anxiety. And I take meds and I am here in the middle of a workday.” 
 
Imagine if living with chronic depression, PTSD, and anxiety was already your new “new normal” before stay-at-home and social distancing orders?
 
The grief support is critical in our community. I mean I felt as close to mentally ill as I hoped  I never would during that period of time when my partner died. I felt manic. You don't know that you need it but I would say that's critical. I had nowhere to go.”
 
Imagine if inclusive end of life grief support -- like for widows of wives -- was more readily accessible, provided, and validated to all -- regardless of sexual orientation and gender identity?
 
“I’m thinking that surely we can do a lot more to reach each other -- so we could all have the community we need -- to smaller places, isolated people. I think that's something that we all need to pursue when we're through with this.
Or maybe we should do it now – who knows how long this is going to last?”
 
Imagine if solutions and interventions to improve health equity among disenfranchised populations were community-initiated so they were designed by and for the people most affected?
 
"I think another problem is that a lot of gays like me don't have kids. And so they have no one to advocate and no one to make those extremely difficult decisions. It's a fact of old age, so who's going to be around to honor our wishes? That's frightening."
 
LGBTQ elders have always feared who will speak for them. Imagine if health care forms worried less about what is your spouse’s name, and more about what matters to you, who do you love, who do you want in the room?
 
The women I interviewed -- and millions of other LGBTQ seniors around the country -- are absent from our national discourse surrounding this pandemic. Just as they’re nearly invisible most of their lives. Long before the pandemic they'd lost jobs, friends, family, and homes because of who they are. In hospital settings some have checked the box for “emergency contact” instead of “married” despite being married over 30 years -- in fear of poor care. They are used to “disenfranchised grief” -- which means grieving in isolation and without society understanding that they’ve lost a spouse -- because their spouse was the same gender.  Seniors who are LGBTQ are also used to being alone. But this doesn’t mean they’re OK being alone. 
  What this all means is when visitors are allowed in elder congregate settings again, and hugs are permitted, isolation and loneliness will still persist for LGBTQ seniors. 
 
Among the many things we are learning with this pandemic are the effects of loneliness for physical and mental health. We must do a better job at keeping all our older citizens connected. And we need to understand that LGBTQ elders -- with non-traditional spouses and often no children or extended family to rely on -- face additional obstacles.  As we begin to move forward from this health crisis, we must create spaces and communities -- whatever this looks like -- for all seniors to finally have the voice, the support, the connection, and advocacy that they deserve.  

Author ID: Carey Candrian is an assistant professor of health communication at the University of Colorado Anschutz Medical Campus and a Cambia Health Foundation Sojourns Scholar.