My spouse is different than she was three months ago. The curve of her breasts is visible even under baggy shirts, her skin is softer, and her encounters with dysphoria are less intense. It’s obvious that she’s healthier and happier now that she’s exploring the early stages of hormone replacement therapy.
Two weeks into quarantine, she realized that staying home full-time might not be a short-term experience. Her doctor uses an in-house pharmacy, so she planned ahead, calling to see if they could refill her prescription early. Although her refill was approved by their online pharmacy, three weeks later, it still hadn’t arrived, and there was no way to track the shipment except to know that it had recently left a warehouse overseas.
Panic set in, and she developed a plan for rationing her doses, counting and recounting her pills. She cried over the uncertainty about how her body might react, fearful of possibly rapid regressions.
After a transphobic experience with a previous provider who claimed to be trans-competent, she was wary to try to find someone new without time to research reviews and websites. In desperation, we posted about her need for a refill on an app that matches providers with prescriptions they can fill without an appointment. This request was denied.
She called local trans-affirming care providers, but they required her to make an appointment with few openings for new patients. Many clinics also lacked delivery options, which would force her out of her isolation in New Jersey into a busy, downtown area of Philadelphia. I was being treated for COVID-19, and she was our suspected in-home patient zero, so it didn’t seem appropriate to commute by train even though she was asymptomatic. Parking would require touching screens or interacting with attendants. We worried about social-distancing and possibly spreading the disease.
Her refill didn’t require blood work because the dosage would remain the same, so we checked more apps, this time seeking a supply that could last through the summer. We posted again where her initial inquiry was denied, noting that she lacked access to typical care due to COVID-19. It was approved, and she was able to pick up this new prescription at a local drive-thru pharmacy. She has her pills, but the original order still hasn’t arrived, and the stress of planning for possible disruptions in routine care has caused lasting anxiety.
For many trans and non-binary individuals, HRT and hormone blockers are a critical part of staying well or even surviving, but many will go without during quarantine. Some will lose access due to a lapse in health insurance coverage, an inability to afford medication due to job loss or reduced pay, the lack of transportation to clinics and pharmacies, relying on a provider who is difficult to reach right now, and a variety of other reasons. Katie Greesely is a licensed clinical social worker who specializes in providing care to queer and trans people. Over the past few weeks, she’s counseled a few clients who are struggling to find the hormone therapies they need.
Two of her clients can acquire their medications, but they’re used to going to clinics for injections. Even when people have access to medication, they might lack the skills, support, or ability to appropriately utilize it without the assistance they’d typically receive. One has located a gender clinic that uses nurses to teach about injection safety via tele-health, showing patients and their support partners how to use and store their needles. This kind of distance education is crucial.
Dr. Vicky Borgia of Radiance Medical Group in Philadelphia says, “I think people can learn this way. A lot of education now happens through watching videos.” She notes that if someone injects with guidance over the phone or a video call and is using sterile techniques, there shouldn’t be increased risks. They’re the same as they are in-person: tenderness at an injection site, developing a lump of hard tissue, and infection. She explains that for many patients, the first few injections they receive by medical professionals are for their own sense of comfort, and that eventually, they start to do it on their own. Dr. Borgia acknowledges that there are some who need more consistent support from a provider, including those who have a disability that makes it difficult to inject or ingest medications without assistance.
Another one of Greesely’s clients has needle-phobia and is struggling to decide if going to the provider’s office is worth the risk. Dr. Borgia notes that those who typically have the support of visiting nurses and other home health professionals should still receive that help. She believes it’s appropriate for providers to welcome some patients into offices (especially those who are elderly, cannot access or effectively use phones or the internet, or have disabilities), but a back-up plan should be in place. Remember that you shouldn’t go into public for reasons other than emergencies if you get sick with COVID-19. Part of Greesely’s role is helping clients find resources and problem solve in addition to offering emotional support as they navigate options.
Anyone who lacks access, changes their dosage, or switches the type of medication they’ll use over the next few months should also manage expectations for physical changes. Many of the outward shifts in appearance that people on HRT or blockers appreciate will not be significantly impacted if people miss or ration doses for a short period of time, but everyone’s body responds differently. Dr. Borgia notes that those who have recently started HRT are most likely to notice changes in appearance if there is a lapse in medication. Because everyone’s bodies are different, those who have been on HRT longer could also experience a reversal of changes that occurred early in their medical transitions, such as the redistribution of fat to or from hips, chests, and other areas in addition to shifts in facial structure, hair texture, skin texture or oil production, and tenderness in the chest or breast area. It could also include the return of menstrual cycles for those with intact ovaries or erections and sperm production for those with testes.
Some physical changes are not typically viewed as reversible. For those who are used to taking testosterone, changes in voice, pattern hair loss, and the development of an Adam’s apple are considered permanent. For those typically on estrogen, menopausal symptoms might be present with a lapse in medication. These include brain fog, hot flashes, and an inability to control emotional responses — which can feel scary to some.
Borgia explains that rationing these HRT medications is typically considered safe as long as folks aren’t on other medications that could be affected or managing other health conditions. She notes that patients should always contact their own providers before making any medical decisions. “Going cold turkey is not advisable,” she explains, noting that it’s safer for your body and mental health to slowly lower doses and ration medication instead. Lower dose options like gels and creams could work as an alternative to pills and injections, but trans and non-binary people will still have to adjust to these changes.
Shifts in testosterone or estrogen levels can also cause mood swings or increased anxiety and depression due to chemical changes even if people aren’t experiencing dysmorphia. Those without access to their typical meds should seek emotional support because of this. Sliding scale and tele-health options are available through many clinics and private practices. Apps, like the one we tried, are an option that’s sometimes more convenient but could also be more expensive.
Dr. Borgia’s practice offers direct primary care (DPC) with sliding scale membership and fee-for-service options, including “pay what you can.” Part of her mission is to make care more accessible and this type of practice is helpful for those who lack coverage. She recommends reaching out to her if you need help finding a progressive, trans-competent provider who uses the same model. Government restrictions on how providers can meet with and care for patients have been loosened during the pandemic, so she believes finding care is possible for most people who desire it. Seeing a new provider might be more difficult if you have insurance — especially an HMO plan. She estimates that wait times for new patients likely sit around 6 to 12 weeks, but she also reassures us, “You aren’t completely powerless even when you think you are. There are methods to find care. It just might be a pain to get.” She explains that patients should be persistent with providers and put pressure on those who aren’t yet offering telemedicine, which is now covered by most insurance plans and available to most professionals. “Providers should return your calls within a reasonable amount of time, and if they don’t it’s time to reevaluate that relationship. Reach into your support networks [to find out where others are finding care]. Call 9-1-1 if you’re thinking of harming yourself or others [or are in crisis].”
Greesely, who is non-binary, actually planned to have top surgery on April 2nd, but the procedure was postponed due to the pandemic. She found support for her frustrations and disappointment on social media — specifically in Facebook groups — and recommends that others do the same. “The community there helped me remember that I’m not alone. I’m going through this with other people.” Hashtags like #Queerantine and #LGBTQuarantine on Twitter can also help people struggling in isolation find their people. Greesely explains that the Internet has always been a safe haven for queer folks, especially those who lack physical community during more standard times. These community spaces we’ve been building over the years online are thriving now. People are sharing about their confusion and concerns and helping each other find resources and camaraderie.
Another suggestion she shared is to think about what other aspects of expression affirm your gender identity. Moving your body in a way that brings you joy could be helpful. If you desire a body that has squared shoulders or developed muscles, exercises that build those shapes could remove some stress and will naturally increase levels of testosterone in the body. If you’d rather dance, practice yoga, or find a new way to move your body, focus on options that offer you a sense of joy. Try clothing that makes you feel peaceful and comfortable or helps you escape through the fun of playful experimenting. If you’d feel more affirmed by dressing up in a suit or wearing a favorite sundress, do that to boost your mood. “This can put you into a better headspace, even if you don’t have anywhere to go. It doesn’t solve every issue, but it might help you feel more like our authentic self.”
Greesely’s final reminder is to be gentle with yourself. These are not normal times, so it’s okay to not be okay.