Our Lived Experiences

Moss (he/him)

I ensured I always spoke to the same doctor and I asked for regular appointments so that she could keep track of my illness progression.

I’m Moss (he/him) and I have been living with Long Covid (Post Covid Syndrome) for almost two years. I’m a part-time PhD student, and in my spare time, I enjoy reading, painting, and hanging out with my dog.

Moss, a man with short dark hair and glasses

When I first became unwell with Covid-19 in March of 2020, there was no understanding of Long Covid. This, coupled with the fact that many GP surgeries were triaging Covid patients to 111, meant that I struggled to get any care at all in the early stages of my illness. Once it became clear that I wasn’t getting any better, as several doctors had told me I would, it was challenging to get referrals, as there were no Long Covid Clinics or effective pathways in Scotland.

During this time, I realised that it was vital to have a sympathetic GP. I tried speaking to a number of different doctors at my GP surgery until I found one who was well-informed, easy to talk to and understood the enormous impact Long Covid was having on my day-to-day life. During the period when my illness was at its most acute, I ensured I always spoke to the same doctor and I asked for regular appointments so that she could keep track of my illness progression. I also prepared for doctor’s appointments by making lists of questions, logging my symptoms and keeping track of the effects of the medications I was taking. Interactions with medical professionals have gradually become easier as doctors are now more aware of Long Covid and some of the protocols for testing and caring for patients.

With regards to trans healthcare, hormone shortages a few years ago made finding pharmacies that either stocked or could get hold of testosterone very challenging. I often found pharmacies would accept my prescription, then be unable to fill it. At the time, I found a national Facebook group for trans men and non-binary people, which was an invaluable source of information. They explained why the shortages were happening and gave telephone numbers for the manufacturers of the product. When I phoned them, they explained how long they believed the shortage would last. I also found out that a particular franchise of pharmacies had the most reliable stock, and I would call every branch in my vicinity until I found one that was able to fill my prescription. Although this was quite tiresome and inconvenient, I managed to fill every prescription I needed during that period.

Personally, I’ve found accessing healthcare for Long Covid far more challenging than I had found getting trans related care before (though I am aware that my experiences with the GIC were very likely made easier due being white and middle class). Being ill with an under-researched, chronic condition has come with lots of new challenges. It is also often difficult to know whether being trans is affecting my level of care. In general, I’ve found that doctors don’t always ask the right questions, and I’ve needed to learn to be more proactive in knowing what I want from an appointment and then directly voicing it.

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