Reflections on the last several months
I have been notably absent from many spaces since the beginning of 2025, including publishing here less than I’d have liked.
On top of the many things going on in the world, the last seven months have seen me navigating some of the most difficult circumstances of my personal life.
Begging for medication
I have spent hundreds of hours of coordinating between between insurance, the pharmacy benefit manager, my rheumatologist, a specialty pharmacy, and my partner’s HR office since December 2025.
Why?
Because Novartis — the company that makes one of the only three FDA-approved biologic medications that keeps my Still’s Disease/Systemic Juvenile Idiopathic Arthritis in check — stopped providing financial assistance to those of us with commercial insurance. Since our insurance doesn’t cover biologic medications, that’s meant I had to repeatedly beg, plead, and provide proof that the $45,000 price tag for a single month of medication for my potentially fatal disease was worth it.
It’s been a mindfuck, frankly.
I finally received my one-month biologic dose that keeps my disease in check on May 9 — the Friday before leaving for the OMERACT 2025 conference in Spain.
That access was life-changing, not just physically but emotionally. Accessing this medication didn’t just allow me to attend and be fully present for OMERACT 2025 — it significantly reduced my pain and helped restore my quality of life.
Of course, this has been far from the only thing that’s been happening.
Craniocervical instability & bulging discs
Since December, I have been managing two bulging discs in my neck. This is due in part to having hypermobile Ehlers Danlos Syndrome, where my body’s collagen isn’t as tight as it should be. This can lead to something called craniocervical instability (CCI), where the ligaments that hold together the skull and neck are too loose — like a rubber band that’s been overstretched and can’t do its job well anymore. This makes it harder to hold your head up like normal, and makes it a lot easier for injuries like bulging discs to pop up.
Despite having a clear start date, time, and activity to the pain I was having, multiple providers blamed this on preexisting chronic pain and even unprocessed childhood emotional trauma. This could easily happen anywhere, but is also a great illustration of how living in rural Appalachia as a transgender person with multiple rare conditions adds new layers of complexity to finding decent providers who truly listen to what a patient is dealing with… even for those of us who are researchers.
My bulging discs started just before Christmas and weren’t diagnosed until April. Even then, this only happened because I switched primary care providers to someone who is direct pay (AKA not under insurance constraints). She also has hEDS herself, meaning she took seriously not just my pain levels but the immense logs of data I had to share about what improved or worsened pain, the start date/time/action, etc.
I’ve had neurological issues as a result of this injury, as it’s caused pinched nerves, numbness, and a loss of ability. Pain levels that were typically a 3–5 spiked to 7–9 daily.
I generally have had a maximum of 2 hours of sitting upright in me before I have to rest and make sure that I’m supporting my neck by using a neck brace, propping up my neck with my hands, laying down, or leaning back against a chair or couch.
This has also caused a lot of muscle spasms. I have had to roll out my leg muscles every single night before I go to be on top of taking a muscle relaxer. While this has eased up slightly with starting a number of vitamin supplements, I know if I miss these things because the muscles throughout my legs will lock up horribly and I can’t sleep.
Everything together has been a lot
Either of these situations on their own would be frustrating and difficult. As you might imagine, the uncontrolled inflammation from not having access to my biologic was increasing both the swelling and pain my neck was causing me.
That doesn’t even begin to touch the stress of being in severe pain, dealing with new limitations, begging for treatment, or living through the many shitty things happening right now.
It’s been a lot, to say the least. So much that I — me, the person known for speaking up at all times — simply didn’t know how to speak up or seek help from others. Frankly, so many people I know already find it hard to relate to the weird medical things I deal with that it felt easier to just not explain.
I’ve been really isolated, even more than normal.
Spain
With a suitcase full of accessibility tools and my partner in tow, I headed off to Spain on May 12.
And it was so good.
For those of you without background knowledge, OMERACT is a global, volunteer-driven, not-for-profit organization committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.
We have 35 working groups, most of which are disease or measurement specific. There are some exceptions to that, including the Equity, Diversity, and Inclusivity working group that I co-chair.
I got involved in OMERACT in 2020, where we had a robust virtual conference. In 2023, I went to the conference in Colorado and now this one in Spain. There is a really great group of patient research partners (PRPs) involved in this work from all over the world, and it’s been wonderful to meet other patients working on research initiatives.
This trip to Spain offered me something I hadn’t had in a long time: relief.
Relief from pain, with my medication administered.
Relief from the fear that can accompany existing in public spaces as a visibly trans person.
Relief from begging to be listened to and heard.
Relief from being in constant survival mode.
I was surrounded by friends, chosen family, and colleagues who truly cared & listened — not just to how I was doing, but to the larger context of what it means to live in a body like mine at a time like this.
For the first time in a long time, I felt safe. I was surrounded by people who understood, who checked in, who made space for both professional collaboration and personal connection.
I was able to fully rest.
To disconnect.
To be present in each moment.
To experience joy without waiting for the other shoe to drop for the first time in 2025.
After the conference, my partner and I traveled across Spain for a few days. We slowed down and adapted our plans as needed. Despite my anxiety, we navigated new places and experiences relying on my (admittedly rusty) Spanish.
I wandered out solo a few times while my partner wasn’t feeling well, allowing me to rebuild some confidence — both physically and emotionally — that I've lost while being so ill recently. It was certainly a major change from not being able to make a grocery run solo because of not being able to lift more than 5 pounds.
Coming home
Coming back to the U.S. has been an adjustment.
I’m honestly still unpacking a lot of things, both physically and mentally, so don’t be surprised if I continue to do so in this space.
I’m grateful to return to meaningful work, but I also carry with me the freedom and perspective that came from traveling abroad. Being able to do more than I thought I could was a reminder of what’s possible when our needs are met and when our healthcare systems support — not obstruct — our lives.
I’m also carrying the reminder that there are places where I can be fully myself, feel safe, and simply exist without having to constantly fight to get my needs met.
Here’s to fighting for a world where these spaces are the norm for all of us instead of the exception.
