Navigating Healthcare: Challenges we Face

Everyone who shared their experiences reported challenges when interacting with healthcare services. The most common challenge faced was accessing care. This challenge showed up in seven different ways.

Denial of care/ Lack of requested services

• Those of us who are Indigenous and have non-insured health benefits often encounter providers who are unfamiliar with this coverage. This can make it difficult to find practitioners we can access.
  • “A lot of different healthcare places have outright refused to accept me as a patient because I have status coverage. When I was looking for a dentist, I had to go to 12 different places.”
• Challenges also come from being denied care or discharged before we receive the care that we are seeking.
  • “I went to the hospital because I got drugged and I was coherent enough to take myself there. They just tested me for STIs and then they gave me a blanket, a sandwich, and told me to leave while I was still having trouble walking and my vision was still blurry.”
  • “It’s hard to find healthcare for those of us who are in active addiction or in recovery. Hospitals and clinics usually decline my friends. Because of this, a lot of my friends have passed away because they were declined care, just because they were judged for being in active addiction or because they were homeless.”
  • “I was turned away from the ER multiple times due to my borderline personality disorder diagnosis, and at other times I was discharged while still suicidal.”

Limited practitioners and services

• We often have limited choices if we are seeking care in rural settings and/or specialized healthcare.
  • “The closest hospital that can care for my type of needs, is 4 cities away. None of the emergency hospitals can care for me because they’re not specialized. They have to send me back to my clinic. If I have an emergency, no one in my city can see me.”
  • “Especially when it gets more specialized in healthcare, we don’t have those options of who to see. A lot of it would be figuring out how to get through it and then have that community support before and after.”
• For mental healthcare, limited emergency services and age limitations further restrict our options.
  • “I really dislike when people pose the psych ward as the only safe place you can go when you’re suicidal. It actually isn’t that safe in terms of the trauma that I incurred from the nurses and doctors. But there aren’t many other options out there.”
  • “Seventeen- and eighteen-year old’s in Vancouver are completely left behind in our current mental health inpatient system. The emergency psychiatric inpatient services are only for people aged 16 and under. Adult psychiatric facilities are technically supposed to be 19+. Because of this gap, I was put in an adult facility when I was still a minor.”

Limited practitioner hours

• Our options for services are further limited if we have scheduling conflicts. We may not want to go to emergency services to avoid overburdening hospitals or long wait times. However, few alternatives exist.
  • “Most healthcare people only work their 9-5s. What this means is that people who have very full schedules, school, work, sex workers who work primarily at night and have to sleep during the day, night shift people in general- we can’t access healthcare unless we go to the hospital.”
  • “I don’t drive and I’m a working mom, so a lot of the time, it’s hard to go get my child from daycare and go to the clinic because their hours are all the same as my work hours. If we really need it, we go to emergency.”
  • “It sucks because who wants to go to emergency? You’re there for hours. It’s at a point where we don’t really go unless we have to. Which isn’t a good way to be either. We shouldn’t have to wait for it to get extreme just to access care.”

Difficulty finding safer practitioners

• For many of us, it can be hard to find safer and affirming practitioners who understand our intersectional identities.
  • “It’s especially hard if there isn’t a database of practitioners who are safe for queer people and when practitioners aren’t clear about their values. Sometimes practitioners will write that they’re queer-friendly. But what do they actually mean by that?”
  • “Finding validating and genuine practitioners, who you can talk to about systemic things is hard. People don’t know who to go to.”
• Family doctors are often a primary point of care. However, finding a supportive and available family doctor can be particularly challenging.
  • “Family doctors are especially hard to find because you need them for so many things and they have so much institutional power.”
  • “Finding a family doctor is really hard, especially one that isn’t harmful.”
• Uncertainty about safety can prevent us from sharing openly with our practitioners.
  • “People hold back from their practitioners because they don’t know if the practitioners are willing to talk about systemic things.”

Financial limitations

• Those of us who can locate practitioners may not be able to afford treatment. Financial barriers can come from public health (e.g., prescriptions) and paramedical services. (e.g., physiotherapy, acupuncture).
  • “Not having access to funds to pay for prescribed medications is an issue. I have clients who were put on samples of pretty intense psychiatric medication. And then that’s it. That’s all that the doctor gave them. It can be really scary and harmful.”
• When we are unsure if services and practitioners meet our needs, consultation fees create additional challenges.
  • “A Google search doesn’t help that much. It actually takes a consultation. But most people don’t do free consultations, so that costs money on top of not knowing what that service does. That leads to confusion and an unwillingness to go.”

Lack of accessible information

• When information is not easily accessible, it takes additional time and resources to navigate healthcare systems and services. Searching for information is challenging, especially when we are in crisis and need imminent care.
  • “Healthcare provider websites are so inaccessible, complicated, and difficult to look at. A lot of it is not accessible for those of us who are autistic or dyslexic. We can’t even look at the things we need to see, so we need to call. But some of us have phone anxiety so we can’t call. Or we can’t email them because they don’t list their emails. And if we live far away, then we can’t ask our questions in person.”
  • “There are so many steps someone has to go through to find programs, to figure out if they’re eligible and able to afford it and how to initiate care. It’s even harder to find out what participants’ experiences have been, the program offerings, expectations for participant commitment, and what people can do if their boundaries or rights have been crossed while receiving services. Finding this information can take many hours and several data sources. People in crisis often do not have the capacity to do this research.”
  • “It’s challenging when we don’t know about resources or how to navigate the healthcare system, like if we’re just handed a pamphlet. It’s so overwhelming, especially if you’re in a crisis.”
• The challenges of inaccessible information connect to discussions around funding and support for providers.
  • “It’s tough because part of me has these expectations for a GP or a nurse, while also understanding that there’s not enough staff and funding. It’s not actually that simple and there are a lot of reasons why people are rushing through things and handing people pamphlets. It would take time and they probably don’t have the staff and resources to do that.”

The second most reported challenge involved harmful interactions based on our identities and lived experiences. While everyone experienced this challenge in different ways, our experiences are connected through the following five themes.

Racism

• In the process of seeking care, those of us who are people of colour are often exposed to racism.
  • “When I go for blood work, it usually takes the person drawing the blood two to three pokes to get the blood. When they’re not able to get the blood, usually they’re like ‘It’s so hard to find veins with people of your skin tone or people with darker skin.’ I’ve never had this issue when I was in Pakistan. With comments like that, I’ve seen patients apologize, they’re like ‘Oh, I’m so sorry.’ And I’m like, ‘You don’t have to be sorry. This is not your fault. You didn’t do anything wrong in this situation.’ And the practitioner shouldn’t be making a comment. If they’re unable to they should just apologize and find someone to help them out. They don’t have to make a comment on your skin tone and how it’s hard to find veins.”
  • “I went to see a specialist about my nose, and he was going off about the noses of different races. Because I look white, he was thinking he was just being buddy-buddy with some other white person. And I’m like ‘Dude no, like no!’ What was really extra gross about that interaction was that they had all this Native art in their office. So, I walked in, and I was like ‘Yeah!’ and I meet this guy and I’m like ‘Oh…great.’
• We can also be exposed to racism that is directed towards our loved ones and other patients.
  • “I have witnessed my friends, who are people of colour, trying to access the simplest of healthcare. And doctors being creepily fascinated by and fetishizing Or the doctors completely not listening to my friends and assuming they know what this person needs or what’s wrong with them.”
  • “I’ve heard nurses make fun of a patient who didn’t speak English while standing in front of her. And nurses betting on Indigenous patients’ blood alcohol”

Fatphobia

• When seeking healthcare, fatphobia often impacts how practitioners provide and withhold care.
  • “As a fat person, fatphobia shows up a lot more than I expect. Even when you’re not going in there for that, fatness is always brought back in. The attitude you get is like ‘It’s weird that you want to be fat and happy in your own body. How weird is that? What’s wrong with you?’ A medical professional telling you that you are wrong for being in your own body.”
  • “There is a way in which healthcare practitioners will blame the individual rather than actually giving healthcare. Fatphobia for example, “It is your fault that you’re eating too many cheeseburgers and you need to cut down on that. You need to, you need to, you need to. It becomes an individual problem rather than in the larger scheme of things, there is no holistic approach to anything, and it becomes a moral failing. When that happens, “because it’s your fault”, actual healthcare is not given to us. There’s that meme of like, Oh I broke my arm, and the doctor is like oh have you tried losing weight?’”

Cisheteronormativity & Transphobia

• Harmful interactions based on cisheteronormativity and transphobia can take on multiple forms. Here are two examples of how this can show up in our care.
  • “I had my chest binder taken away and was repeatedly misgendered and misnamed.”
  • “Healthcare providers always get my pronouns wrong and often assume I’m straight.”

Stigma-cased care

• The stigma around HIV, STIs, and being sexually active create barriers to sexual health services. This stigma can impact our relationships with ourselves, our health, and healthcare.
  • “I’m HIV positive and I was talking to a nurse who was very judgmental about the sex that I was having and not having. I told her that I know the legalities around it and that there are risks, but that I also know I’m getting my care properly done and that I’m taking my medications. She was using fear-based analogies and telling me I could go to jail. I was like, ‘Whoa. I know the legalities because I my work focuses on sexual health.’ But imagine if I didn't.”
  • “When I was 19 or 20, I went to a clinic, and I asked for an STI test. And they were like, ‘Why? What kind of risky behavior have you been getting into?’ That was when I was like way younger and I didn't know about sex-positivity. Then I felt bad and gross. I ended up not getting tested for anything because the doctor kept asking me really invasive ”
  • “There’s so much shame if you're having sex with multiple partners. They start putting like the fear on to you. If I didn't have a street nurse, I probably wouldn't have gone to normal care.”

Practitioner Discomfort

• When practitioners react with discomfort to our identities, this can create pressures for us to educate our providers or to stop seeking care. These additional burdens come at the expense of our well-being and quality of care.
  • “I used to really feel the need to explain my gender identity to every nurse and doctor because I knew they would become uncomfortable if I didn’t. It was really exhausting to be like, ‘I use they, them pronouns and this is the reason, and please call me this. These are the surgeries I’ve had to let you know what my body is doing.’”
  • “I wanted to discuss chronic pain, sexuality and gender, and the dynamics of being a white-passing person with an anglicized name who was routinely told that I didn't have the right to claim my Chinese identity. She was white, cisgender, heterosexual, and able-bodied, and the few times I did bring these topics up were uncomfortable for both of us.”

The third most reported challenge was being pressured to make specific healthcare decisions. As youth, we often face difficulties navigating power imbalances with our practitioners. Pressures to make decisions prioritize practitioners’ perspectives and values over our agency.

Pressured decision-making

• “As queer and trans youth, especially as we have more intersections, we often do a lot of research on what we want and need for our bodies. It’s a protective measure. What can happen when we’re going in for help, is medical professionals telling us what we need and don’t need. I’ve had situations where I’m looking for hormones and a medical professional tells me I don’t need that, or they tell me they don’t think that’s important.”
• “It’s hard to advocate for yourself. There is a power dynamic that shows up with healthcare practitioners, being knowledge keepers and telling you what you need to do. Even if you don’t want to do that, it’s pressured.”
• “Some of us don’t feel like we have power in our relationships with our practitioners. It feels like being under another authoritative individual, who is usually white, asserting their role and that they know best. There’s a lot of indirect and hidden racism in those relationships, but a lot of physicians don’t see this. BIPOC youth who show up in these scenarios have questions and real concerns and real fears that they want to be addressed. But they aren’t addressed. We’re told they don’t matter, and they’re shoved aside. And that we just need to follow the practitioner’s instructions.”
• “It’s a very arrogant attitude, it’s very ‘You don’t know what you’re talking about. We are here to help you and you’re being ungrateful that you’re not taking this opportunity.’ It’s this attitude that makes the individual who is trying to seek healthcare feel bad if they’re not of the same opinion as the healthcare provider. That’s not okay.”
• “It’s like when practitioners use words like ‘Oh, but that’s so dumb. Are you sure you want to do that?’”

The fourth most commonly reported challenge was disrespectful interactions. Healthcare challenges worsen when our practitioners are patronizing, invalidating, and dehumanizing.

Patronizing interactions

• “I’ve been to a few different places where I’m made to feel really stupid. And I’ve never quite understood it because I’m clearly not a healthcare professional. That happened with a neurologist recently. He talked to me very patronizingly because I didn’t know something. But that’s why I’m here, he’s supposed to tell me.”
• “Practitioners sometimes take it personally when treatments are not working and then they project it back as ‘You didn’t do it properly. You should be more disciplined. Do these exercises more frequently. It’s your fault it didn’t work.’ My day would be ruined after every appointment I went to, because I would be thinking about how they said I was lazy.”
• “There are a lot of hospitals that treat patients like we don’t know what we’re doing, like we’re children. Then we don’t want to see our doctors. It gets hard.”

Invalidated experiences

• “The doctors will tell me they know how my treatment should be going because they studied it. But my condition is not getting better, it’s getting worse. I feel it every day. Over time, what they learn changes, but my feelings are constant.”
• “Anytime I tell my doctors why I want to change my contraception, they're like, ‘Well technically we have no studies saying that, so it's not true.’ Studies or not, this is how I'm feeling. This is what’s happening to me.”

Dehumanizing practices

• “There are teams that help manage the increasing rates of HIV in BC. Most of the times, these teams share information about folks as case numbers. That is not okay. I had to leave those spaces because I was not comfortable being there as an HIV positive individual.”
• “In general, our healthcare system is very rushed- it’s kind of in and out. When that happens, it feels like they don’t really care about what you’re going in for.”

The fifth challenge features concerns that practitioners will share our information without consent. These concerns can push us to seek alternative sources of care, withhold information, or avoid accessing services.

NONCONSENSUAL DISCLOSURES 

• “When I was younger, a big challenge was finding healthcare that wasn’t connected to my family and parents – healthcare that I could access myself, without needing their transportation, consent, or insurance coverage. I’m not out to my parents and so, I wouldn’t want them to disclose certain things to my family.”
• “My parents didn’t know I was sexually active or in a relationship and I was asking about things like birth control. I had similar concerns when I was talking about my mental health. When I was younger, I was worried about those things because I was under the age of consent. If I talked about certain things, the practitioner would have the ability to discuss those to my parents, so that added to my worries.”
• “I’m covered under my parents’ insurance but that means I have to disclose all my procedures or what I want to get covered because they are the primary contact.”
• “There are some clinics who are like ‘We are queer!’. What can happen there is if you go in and you’re not out to anyone, and you’re going there because they provide a specific service, you can get outed for that for going to the building.”