In 2005, Mo Angelico was 20 years old, living in Montreal and experiencing the usual stress associated with coming out. During this time she was also hospitalized for appendicitis and developed a hospital-acquired infection. It resulted in ongoing sickness and debilitating fatigue, and her symptoms eventually nosedived in 2010 after years in remission.
These days, Angelico has limited mobility. She stays at home for days on end, utterly exhausted. When alert, she seeks the help of various specialists and alternative health providers for what is generally regarded as chronic fatigue syndrome (CFS or myalgic encephalomyelitis). Meanwhile, her cognitive senses have declined, her social participation is at a standstill (forget attending gay events), and she has let her hair grow long despite the fact she prefers a shorter “queer ’do.”
Despite this, Angelico’s difficulties are not readily apparent to an observer.
A new study by a Toronto psychotherapist is bringing to light the high number of invisible conditions such as Angelico’s. Silvana Bazet noticed the abundance of “invisible” physical health problems suffered by her queer and trans-identified clients, as well as among community members.
Yet “they are not recognized by the queer community, the trans community, the healthcare community that takes care of queers,” Bazet says. Her report, “You Look Great! Lesbian, Bisexual, Queer Women and Trans People Living with Invisible Chronic Illnesses and/or Conditions (ICICs),” surveyed 158 participants across Canada about their experiences living with ICICs.
Bazet says there is a dearth of material about disability and “queerness.”
“I wanted to be able to give something to people that they could actually feel reflected the way that they interact with the system here,” she says.
Bazet says many of the conditions documented are more prevalent among women. Generally speaking, ICICs – including fibromyalgia, CFS, chronic pain, irritable bowel syndrome, chemical sensitivities – have non-observable symptoms and tend to be episodic. Individuals may appear well when they are not.
She used social media to recruit participants and says an anticipated sample of 30 to 40 people ballooned to much more. Perhaps most shocking, she says, is the number of young people among those with ICICs – most participants were between ages 30 and 39.
Bazet says participants often feel isolated because friends, colleagues and family do not believe they are ill. She calls this the “triple D threat” of denial, dismissal and downplaying. Participants ultimately find themselves duelling with the double closets of disability in the queer community and queerness in the wider world.
ICICs also have a significant impact on people’s gender and queer identity, a challenge acknowledged by 56 percent of participants. ICICs prevent people from feeling strong and self sufficient – two markers of “self” for those who identify as butch, femme or androgynous.
Angelico identifies with this struggle: “In some ways, my illness has isolated me from the queer community completely, and I just kind of forget about that part of myself because there’s no space for it. All there’s space for is survival,” she says. “I feel really cut off from my community. It’s really sad.”
Bazet hopes her initial snapshot will get a conversation started and help improve and introduce services and supports.
She hopes that if the queer community takes notice, it can begin to make changes to accommodate those with ICICs. For example, organizations can opt to become scent-free to accommodate individuals with chemical sensitivities, or community events can be planned earlier in the day and incorporate breaks so that individuals with pain and fatigue can participate.
Bazet says accommodation sometimes requires resources, but more often it’s an attitude of inclusivity that is needed.
Lori Ross, the leader of a research team that studies queer health at the Centre for Addiction and Mental Health, says better education for healthcare providers is the most crucial gap.
“Providers are not equipped with the tools they need to be able to provide culturally competent care to LGBT people,” Ross says. “I think it’s important for us as researchers in the LGBTQ community to know more about the experiences of individuals who are living with ICICs so we can be more thoughtful about how to make sure that people are able to both participate but also have our research be meaningful and reflect their experiences.”
Bazet’s report is available free online: silvanabazet.com/research.