I’m a 28 year old trans man and I have type 1 diabetes, I’m also blind in one eye. I work as a rope access technician. I’m about to complete my PhD in trans history, and in my spare time I enjoy conservation volunteering.
I’ve lived with type 1 diabetes for several years and have a lot of expertise about how to manage it in a way that feels livable. However, in clinical settings, my experience is often dismissed by doctors who assume they know better. For example, people with type 1 are advised to keep their blood glucose between 4-9mmol/l. If you dip under 4, you become disoriented and confused. My job is risky and I’m often responsible for the safety of others at height, so I sometimes make the choice to run my blood glucose above 9, in order to avoid accidentally going low and becoming unsafe at work. I receive a lot of pushback on this from clinicians, despite the fact that my blood glucose averages out at a healthy level. Doctors threaten to withhold access to vital technologies, like my continuous blood glucose sensor, unless I comply with their preferred clinical management of my diabetes. In an ideal world I wouldn’t have to intentionally run my blood high, but I need the work, and I would probably be let go if I tried to get a break every time my blood went low, so I don’t feel I have much choice.
I’ve had the most success navigating healthcare barriers by engaging in a lot of self-advocacy work. I stay up-to-date on medical research about type 1, new insulins, new management technologies, etc, so that I can offer relevant alternatives to my doctors’ one-size-fits-all approach. When I am prescribed new medications I keep a journal of side-effects to show my consultant. I go to appointments with a clear written plan of what I want to say and ask. While I know that I deserve healthcare that supports the life I actually lead, and try to be assertive about things that I can’t compromise on, I’ve learned to pick my battles, especially when it comes to being kicked off a service I need access to.
In terms of trans-specific healthcare, I spent years waiting for NHS appointments; it was a tough time. I was fortunate to have the option of getting top surgery privately because I couldn’t wait any more, but it was very expensive. Now I’m back on the NHS, I dread the dehumanizing questions the GIC ask me, the never-ending loops of administrative bureaucracy, and the way my bloodwork always seems to go “missing” right before I need my shot. I’ve been waiting for bottom surgery, but learned this year that the NHS has not renewed my surgical team’s contract; I do not know how or when I will be able to get surgery.
My best trans healthcare tip is: meet other trans people, support them, and allow them to support you. Accessing healthcare in a hostile environment is exhausting but having a care web of people with similar experiences will help build your resilience, knowledge, resources and ability to self-advocate.