Those who have been following this webbed site for a while may know I've had my fair share of medical problems going on. I won't get too into detail here, so don't worry, but generally I suffer from "everything is fucked and we don't know why" disease (fibromyalgia)!

I've been perpetually tired since I was about 9, I've been having increasingly frequent muscle cramps and spasms since I was 14, but I didn't start taking control of my own medical care until I became a legal adult at age 18.

Since then, I've encountered all sorts of doctors, most of which honestly lowkey sucked. At best, I would get a doctor who was good at their job but still misgendered me in their reports. I read all of those reports, by the way! I recommend you do too! It makes easy evidence to report to a hospital's board of ethics. :)

My family doctor growing up was. Fine, I guess, for an able-bodied kid without too much wrong with them. His dismissal of my emerging neurodivergency and mental illness definitely set me up for failure, and perhaps telling a kid to simply Stop Playing Video Games to feel better wasn't the best or most sound medical advice, but I didn't have many problems until I started taking a more active role in my own medical care.

I first officially reported my chronic fatigue and pain when I was in my senior year of high school. At first, I had a physician's assistant help me out who was very helpful; he took a ton of bloodwork, explained what it all meant, and told me to get some vitamin supplements. This was huge because the main doctor at that practice did not believe in vitamin supplements! Unfortunately they did not help, and I could not afford to keep taking something that didn't even help. That PA was gone the next time I went for an appointment.

The next physician's assistant I saw (the main doctor was too busy, which may have been for the best) told me to take more ibuprofen. If she had looked at my chart she would know taking NSAIDs in large quantities along with SSRIs (a common antidepressant I have been on since I was in middle school) is dangerous. Good thing I knew that on my own! Always look up interactions between your prescriptions and common OTC meds, by the way! I did not have a single doctor tell me those things!

I went off to college with every adult in my life telling me that my problems would simply Go Away, with the amount of walking outdoors I would have to do on campus. They in fact got worse, so I went to the campus health office, which as it turns out does not treat long-term conditions. I'm not sure what they do, to be honest, other than like... Give you ibuprofen and covid tests? I woke up one day with a limp so severe I was late to all of my classes. I bought a cane.

Next step: find a new doctor! I asked around at my college's LGBTQ+ club for recommendations and went to one of the ones close by that they said was good with trans people. This was in fact, incorrect! She misgendered me in almost every single report, in fact! But she gave me the referrals to go see specialists, so I can't be too mad I guess. Despite my insistence that my sleep had nothing to do with the fatigue (I'm very good at sleeping! I do not snore! I do not nap unexpectedly!), she refused to give me any more tests until I got a sleep study done. I am still almost $2000 in debt because of that shit.

I sleep good, my nerves are fine, my bones are fine, my blood is fine, my spine is fine, my diet is fine, my joints are fine; as is common with fibromyalgia, all of my tests showed up as normal. I even eat healthier than the average college student, according to a local nutritionist! Eventually, it got to a point where she said the only thing I can do is physical therapy. There is no other option. I could not afford physical therapy for a long time, so I just stopped going to the doctor's office for a while.

When scheduling my next routine exam, after collecting a chunk of savings big enough to afford physical therapy, I learned my doctor had quit. By this point, I have seen so many specialists, nurses, and primary doctors (and their assistants) that the thought of re-introducing myself and all of my problems-that-weren't-really-problems had me exhausted. Luckily, there was a last-ditch effort my girlfriend had made by searching on the LGBTQ+ Healthcare Directory. When I had searched it years ago, I found nothing in my town. But since I've started college, we have gained one (1) singular LGBTQ+ focused health clinic in town. And they take insurance. And they could schedule me for the very next week.

Listen to me, listen. There is a baseline level of trust you need to have in medical professionals in order to get things done; I need to trust the nurse will stick the needle into the vein, I need to trust that the neurologist will not shock me more than is necessary, I need to trust the primary care practitioner will at least attempt to prescribe me something that will help. But as a general rule, I do not fully trust any medical professionals. Does that make sense? Every doctors' visit is a fight. I am on the defensive, I am sure of myself and confident in my own experiences, before I even meet the doctor. To do otherwise means my very senses are called into question, means I will be given a prescription of spinach and sunshine. If I bring up more than one problem in a visit- ESPECIALLY if they appear unrelated- I am scoffed at, dismissed. Looking for attention.

For the first time in my life, I was listened to and talked to like an actual person during a doctor's visit at this clinic. He wrote down all of my symptoms with grave understanding, he pulled up all available records and asked me to sign the form for release of records that he didn't have yet. Previously I had to do the heavy lifting, pleading with my doctor to see the value in having old bloodwork records. He explained everything he was doing, why he was doing it, what any "strange" numbers or readings would mean. I have not once felt condescended to. He does not act threatened or upset by the idea that I know some of my own body's baselines. My detailed explanations of every symptom do not catch him off guard or weird him out.

When this man received my old records, he apologized to me on the previous doctor's behalf, said that he's so sorry I've been disrespected all this time, that he understands why I'm so frustrated. He told me he was considering me outside of work and thought of a new solution. He brainstorms and writes down different medications and vitamins that could help and gets my input on everything. He wants to know all about what I'm doing in psychiatry, in physical therapy, at home. He reads up on the latest medical studies, especially those about trans patients. He takes all of my "unique" biology, the medications I am on, the transition I have undergone, into careful consideration.

It turns out there are prescription-strength vitamin supplements! Nobody ever told me! I'm going to try those now, in conjunction with physical therapy. It's only been a few days, and none of this is instant, but I'm hopeful. He wants frequent bloodwork, but I don't mind, because I know what it's all for. He can do simple tests and procedures in-house for no extra cost. I have not once been scolded or condescended to for biting my nails or having computer-based hobbies. He wants to talk with my psychiatrist, do you understand? He wants to understand all of me, so that he gets the full picture of what's going on; after all, some of this shit is probably psychosomatic!

It's a different kind of hope than the one I've encountered in the past, because this time I know if something doesn't work, I won't be shrugged at and told to try exercising more. I'm not necessarily hopeful the extra-strength vitamins will fix me, I'm hopeful that it's a start, and that I don't have to fight tooth and nail to be considered worth helping. I hope everybody who has struggled to be taken seriously in the medical system encounters this someday. I hope you all are able to find someone who respects you and finds you worth helping, because you are. Keep looking, and fighting for yourself, and use every single resource you have.

♥Jay