a blog and resources for trans survivors and loved ones

  • Empowering.
  • Healing.
  • Connecting.

Over the past four years, I’ve struggled with chronic illness more intensely than I had before. This became much more difficult to manage with increasing symptoms and a lack of support from family and institutions while I was in college, thousands of miles away from home. On-campus resources were minimal, so accessing healthcare often meant taking the bus downtown and then walking several blocks to get to an appointment, often missing class in the meantime. 

It’s often felt like an additional full-time job to manage my health care—bouncing between providers and trying to get answers to questions when I didn’t even know what to ask. 

So many trans people and survivors of violence live with disabilities and chronic health issues, and end up spending more time than we’d like navigating health systems while also facing barriers to getting the care we need, from transportation, to insurance, to a lack of understanding of how health systems work.

Advocating for ourselves with providers can feel exhausting, whether it’s repeatedly explaining our health conditions or identities, asking for the accommodations we need to get through the door, or simply pushing for the care we need and deserve. 

It can also feel deeply unfair to be the person who is “responsible” for contending with anti-trans bias in healthcare settings. When we’re at our most vulnerable, we need support, and providers who already “get it,” not to become impromptu educators on trans 101. 

For our own safety and ease, we’re often settling for care that doesn’t meet all of our needs. It might give us information about our symptoms, but leave us devastated and drained after being misgendered or dismissed for an entire visit. 

The strategies we have for self-advocacy might not always look like they have a huge impact. I’ve also been recognizing a lot of the small ways that I’ve learned to advocate for myself without even realizing it, and I would guess that many trans and nonbinary people have also developed strategies to access necessary care.

These strategies might be more focused on dealing with a fallout after a difficult medical appointment, and practicing self-care to get through moments when we know we won’t be able to have our needs fully met. Self-advocacy can be loud or quiet, or both. 

There might be moments when we have the energy to explain why we need certain care, or to explain our identities to a provider. Other times, this might feel impossible and draining and destructive to our health. 

Sometimes self-advocacy is just the practice of noticing when something felt uncomfortable, and processing this and thinking about how we might respond in the future. After many years of “settling” for whatever healthcare I could get, I have often not allowed myself to feel frustrated about receiving inadequate care. Sometimes self-advocacy is recognizing that we deserve better and are allowed to look for another provider if one is not able to meet our needs. 

Self-advocacy could look like commiserating with other people in our community, and asking for recommendations for a provider who is trans-knowledgeable and trauma-informed. 

It might be talking with a provider or a therapist about the impact certain healthcare experiences have had on us. 

For a long time, I felt like I couldn’t share my experiences with anxiety with health care providers because of several providers telling me that my symptoms were “all in my head,” or just a result of anxiety. It wasn’t until I found a provider who could understand how my mental health impacted my physical health that I felt comfortable opening up, which has allowed me to get care that I had needed for a long time. 

I’ve been able to advocate for myself by letting a provider know that receiving automated test results makes me anxious, when speaking directly with a provider who can explain their meaning gives me more clarity and ease. We can advocate for ourselves by expressing the ways we prefer to communicate, and asking for the best way to reach out to a provider (calling the office directly? Sending a message through a patient portal? Setting up a new appointment?) Asking for clarification when we need it. Contacting the after-hours helpline. 

Self-advocacy is asking someone to go with us, or pick us up, or check in with us, or be a supportive voice on the phone. It’s reducing stressors for ourselves, like looking at bus lines ahead of time, or calling to ask about parking or how to navigate a large building or hospital. 

When it comes to having our identities as trans and nonbinary people respected and affirmed, self-advocacy could look like wearing a pronoun button or pin, or some other visible signal of our identity or pronouns. It might be finding out if anyone in our community has seen a specific provider before, and how knowledgeable they were about trans issues, if only to prepare ourselves for what to expect. 

A friend of mine sat down with a provider and had them go through their documentation, correcting each instance of misgendering. This takes a lot of effort and patience to do, and it’s not something that everyone has the capacity for. But it can also definitely make an impact on that provider, helping them to recognize how frequent and how harmful these slip-ups can be. 

Another option might be having someone there at the appointment with you who’s able to ask follow-up questions you might forget, or make notes about the provider’s instructions, or correct misgendering when it happens. 

For me, self-advocacy has also looked like asking a provider to walk me through a procedure before it happens. Being willing to take up space and time and asking for the information I need to feel comfortable. And even then, letting the provider know that I feel anxious or uncomfortable. 

In whatever quiet or loud ways you advocate for yourself, remember that you are deserving of care that affirms your identity and meets your healthcare needs, simple or complex. 

This is a lot easier to believe in theory than in the moment. It’s taken me a long time to internalize that there are providers out there who want to make sure that their trans patients have access to the care that they need, in a way that’s not just affirming, but also informed. While it may take many attempts with different providers to find them, I feel hopeful about more providers seeking out and learning the skills they need to properly care for their trans patients.