Author Topic: Finding the lack of control hard.  (Read 171 times)

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Offline F_P_M

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Finding the lack of control hard.
« on: July 10, 2020, 10:08:50 am »
For all we're told transition is all about becoming "your genuine self" and regaining some sense of control over your life, your body and your sense of self, i'm finding the gatekeeping and the nonsense of medical transition extremely difficult.
Having to say "the right thing" to medical professionals to be taken seriously, having to answer irrelevant and honestly offensively gender biased questions about whether you liked the colour pink as a child (ffs what?) or played with dolls or had female friends, having the way you dress critiqued and analysed, having demands that you do things in a specific order and do it NOW NOW NOW or else you're "stalling" and "not really committed" is grating on me.

I finally got a deed poll signed but then lockdown happened and it wasn't a priority to change my name during a global pandemic. And then I lost the deed poll because for about 4 months face to face appointments have not been happening and i put it somewhere "safe" and can't remember where. The endo I saw decided I was "stalling" and made me feel like I was failing for not being more determined to change my stupid name on my bank cards but honestly I don't bloody care right now.
My bank cards are the least of my damn concerns right now and everyone I care about already calls me by my chosen name so it just doesn't feel like a major priority to change my id yet. ESPECIALLY as I still don't pass and feel uneasy about changing my name and risking outing myself to potentially hostile strangers, but the endo and psychiatrist don't care and don't acknowledge that worry and just see me as being "difficult" and "not committed enough" and it makes me feel like I have to jump through their stupid hoops or else they'll deny me treatment.

and this is very much how i'm finding the whole thing. A lot of hoop jumping, a lot of performing seal nonsense to appease cis people and convince them you "DESERVE" to be listened to.

I'm in an ongoing argument with my gp over shared care because even though the doctors who agreed to give me hrt are the SAME doctors i'd see at the NHS GIC (literally the exact same people) because I jumped the 2-3 year queue by paying for their private consultation magically their opinnion isn't as valid as it would be if they were working in their NHS uniform which is frankly INSANE. So my gp refuses to agree shared care, citing "money" as an issue andso every month I have to email the private email, wait a week for them to pick it up as they're hugely oversubscribed, wait for the doctor to sign a paper perscription and post it to my home address, wait for that to arrive in the post and then hope my local pharmacy has some in stock which they often don't and have to wait a few days for them to order it in.
all in all it can take THREE WEEKS for me to obtain a fresh perscription and while that's going on i'm getting less and less of my medication and getting more and more stressed about running out.

I live in constant fear that I WILL run out and you know, this month that's looking very very likely. I have probably only 3 or 4 days left and the perscription that was supposedly sent out last week still hasn't appeared.

and if I run out of my hrt, i'm terrified of what's going to happen to me. because my hrt isn't just about the physical changes, it also eases my physical pain and the illness my natural hormones cause me. Without my gel I suffer migraines, cluster headaches, shooting pains in my limbs, chest pains, hot flushes, cold flushes, nausea and intensely painful cramping.For 3 out of every 4 weeks i'm in so much pain I can barely function. Gel changed everything, suddenly those pains disappeared. I get a headache every so often, usually accompanied by spotting as my stupid progesterone level hasn't figured out it needs to sod off yet but generally speaking i'm in a LOT less pain. I'd say pain reduction is a good 70% less than I was at. Previously I honestly felt like my only way out of the pain I was in was to just throw myself off a bridge but on gel I can function, more importantly, I don't feel miserable and suicidal and crippled by agony.

If I run out, how many days do I get before the migraines come back? before I get all the huge cluster of awful that leaves me wanting to peel my own skin off?
It scares me so much and honestly how is it fair to inflict this level of stress and anxiety on someone?
How is it anything but cruel to deny someone medication that eases pain?

Yet my gp refuses and I have to keep arguing and i'm exhausted by it. People tell me "find a different doctor" but honestly there's no guarentee another one will not be exactly the same. Unfortunately the overwhelming majority of doctors have no idea how to treat a trans patient and as a result err toward doing nothing. I won't know if a gp is trans friendly till I sign up to their books, make an appointment and come out to them and to be honest, I don't want to have to come out to potentially multiple strangers to find the ONE doctor who won't be useless.

my gp is generally speaking not terrible, I do like her but her boss, the manager of the surgery is a raging douche who i've had issues with before.

I have had so many years of dealing with actively hostile or dismissive and unpleasant gps on the NHS and finding one that actually treats me like a person is in my experience rare enough, so just "changing doctors" is not only a huge amount of work and stress but also means I potentially lose a doctor who in all other things is pretty decent and on my side.
She's just <not allowed> with the whole trans thing.
and so many of them are.

but this is what i'm finding especially hard right now. The lack of control, the lack of autonomy. I feel like, worse than ever, my life and health is being dictated by doctors and often complete strangers rather than me. I don't get any say, I have no rights or power, I am just dragged along for the ride. I have to smile and nod and behave the way they expect me to or else I won't get any help and that lack of bodily autonomy is really causing me a lot of problems with my mental health.
I've gone from feeling like I have no control because of my body to having no control because of other people's choices about my body you know?
at what point do I get to make those decisions? When do I get a say?
It's MY body and why is it that at 35 years old I still don't get any right to say what I do with it?

instead I have to beg, plead, argue and convince everyone to please let me have this tiny shred of freaking dignity, this teensy tiny piece of help.

I don't feel like I have any say at all. So often I just get told "no" and honestly my entire life that's been how i've been with doctors. They never listen to me, they never treat me as a person, i'm just a number and I always come away feeling dehumanised and disempowered

I don't know how much longer I can live like this.

transition was supposed to make life better for me, it was supposed to give me control. It hasn't. It's simply taken control from my faulty body to strangers. I'm still as powerless and trapped as ever.

And i'm absolutely miserable.

I finally after decades of tests and drugs that only ever made things worse found a solution to my pain and these doctors are just dangling it a little above my reach. Taunting me with the prospect of a life without pain, one I apparently don't deserve because if I deserved it they wouldn't keep it away from me now would they?
In order to obtain it I have to conform, I have to ram myself into a narrow little box dictated by cis white men, I have to perform and comply and do what THEY want rather than what I want. My wishes, my wants are irrelivant. It's a conveyer belt and I have no say in the pace or the order in which things are done.
None, at all.
I have to tick stupid pointless boxes rather than being permitted to be ME.
I have to wait.. and wait... and wait and if I complain i'm ungrateful.

I have no bodily autonomy and I probably never will. I'll always and forever be beholden to doctors who can at any point take my medication away from me.

How is that any way to live?

Offline RandyL

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Re: Finding the lack of control hard.
« Reply #1 on: July 11, 2020, 09:44:53 am »
I'm so sorry that you feel such pain and are finding little empathy in dealing with it. I'm in the US so can't offer any practical experience.

Do you have a therapist who could lean on the doctors to maybe get you medications for a longer period? It IS a mental health issue as well as physical, even if this is not a psych med. I get my meds in 90 day refills, and see the doctor once a year for a check-up and a new prescription. The refills do not involve the doctor's office, only the pharmacy.

I hope your meds can come soon. Hugs

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Offline Pammie

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Finding the lack of control hard.
« Reply #2 on: July 11, 2020, 11:13:48 am »
Like you I started down the private route and got diagnosed by a private therapist then got hormones prescribed there too. Then that clinic closed and I ran out of money so had to go in to the NHS system. My gp had no clue but accepted the private diagnosis and carried on my prescriptions. After 6 months I managed to Get Leeds GIS to support my GP.
After 22 months I got an appointment at Leeds to get in the system but i’m thinking GCS won’t happen for another 4-5 years.
I changed my name immediately I started my private therapy and months before going full time.
Are you not full time yet? I couldn’t wait to get the deed poll done and would encourage you to do the same - it’s a fantastic feeling!
It’s hard work waiting for the wheels to turn in the NHS but the prize is amazing! There have to be checks and balances for everyone’s sake.
Keep your chin up. Xx

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Offline F_P_M

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Re: Finding the lack of control hard.
« Reply #3 on: July 11, 2020, 08:11:28 pm »

I got my deed poll signed and made my bank appointment for a name change just as lockdown happened. So then my appointment got cancelled and I put the paperwork away "safe" and now I cannot find it. Which means I will likely have to get a new one signed, which I can't do because we're not supposed to have non family members over.

and at this point it became just.. not a priority. All the people who matter call me by my chosen name anyway and the amount of times I have to use my legal name is.. well.. it doesn't happen often honestly. I've gone by a name that wasn't my own online and to the local community for years anyway, so I guess it just... isn't as big a deal for me to rush out and change it.
also i've already done that once when I got married and remember what a pain in the arse it was so i'm not keen to do it again as it's extremely stressful.

I also got really confused about what order I was supposed to change things in and what organisations I could change my gender marker or title with and which I couldn't and when stuff gets too confusing I admit, I kinda shut down. Maybe it's an autism thing but when i'm presented with too many things to do I just become paralyzed.

With changing my name and titles it's a LOT of organisations I have to make a face to face appointment with, have to come out to a load of random strangers who may or may not react okay (some people get SUPER wierd) and hope what I have is enough for that particular agency/person as they can be needlessly difficult about the sort of bloody paper the deed poll is printed on and stupid <not allowed> like that.

i was referred to charing cross in april last year so i've already been on the wait list 15 months. When I last rang them in december they said the wait time was closer to 3 years than 2 so yeah... I doubt lockdown helped that.
It ain't happening any time soon.

I am almost out of gel, I think i literally only have a few days left, if that. I'm terrified and I haven't been able to sleep in days for worry. I asked for this repeat perscription weeks ago, it just hasn't appeared and the reason I was only given a month was because the psych who was giving me the script was being a jerk because I hadn't attended my endo appointment when HE wanted me to because LOCKDOWN FRICKEN HAPPENED and the hospital couldn't process my bloods ffs. (i had them done, they just then ended up getting stuck in processing because the lab was busy with more important stuff)
I mean I explained this, that there was no point attending an endo appointment without my sodding blood results and that I shouldn't waste his time, my time and £300 on an appointment that would only be 5 minutes of saying "i don't have my blood results" and him replying "well get them done"
I even talked to the endo's secretary about this and she recommended I postpone the appointment.

So in a stunning act of bullying, he refused to give me my usual 2-3 months and instead only gave me a month to force me to make another endo appointment asap rather than wait till lockdown eased and I could get it done properly.

Endo appointment happened as it would have anyway as I was on the list, I didn't drop off the list I just had to postpone an appoinment and go back onto said list. And it was fine, i got my bloods in the end after chasing my doctor a lot so that got done back in June and yet still, no perscription.

My report came. No perscription.

And I just feel like honestly at this point they're doing it to punish me for not doing things THEIR way and for wanting to take things at my own pace and my own comfort level.

I'm out to everyone who matters and to anyone else it's none of their damn business anyway. I use a male name and people just go "ok" and that's that.

Ultimately, I pretty much socially transitioned a looooong time ago when I was accepted as "a guy in a female body" by my friends who just accepted that completely and always made me feel comfortable and part of the group. And because my friends always treated me like one of the guys and the people in our local community all know me by a male name anyway I guess it just... doesn't feel that urgant to finalise it all legally you know? It's a lot of stress and headache for not really much gain. The only change to what I have right now is i'd have a card with "mr" on it instead of "mrs" and how often do I look at my cards?
Heck, my photo id isn't even in my legal name because I couldn't be bothered changing it when I got married as it cost money and involved a large form and I just went "naaaah."
NOBODY ever cares, all they care about is the photo looks like me and the year of birth means i'm old enough to buy scissors (yes, I get ided for scissors but not alchohol, wth?)

When everyone around you uses your chosen name and pronouns anyway and socially you're pretty comfortable where you are, why would you go through the stress of rushing to finalise stuff with forms?

It's just NOT a priority for me.

What IS a priority is getting my hrt so that i'm not in PAIN.

Transitioning was for me never about the social side as honestly nothing much has changed there. Life goes on as normal. But I was in a privilaged position from the start I suppose having a bisexual partner and friends who already saw me as a guy in all but physical form. Transitioning was always about the medical aspect and the benefits of giving my poor broken body a hormone it needed to function correctly.
That i'm slowly changing into someone I can actually recognise in a mirror and who doesn't look like an imposter wearing my flesh as a poorly fitting mask is kinda.. a secondary benefit to the lack of pain. like, it's nice but it wasn't the primary reason I went down this path.
I spent 25 years of my life trying literally everything conventional medicine had to offer to try to get my body to function correctly, to try to feel well and like I wasn't being constantly poisoned.

I honestly never thought i'd be able to look in a mirror again, so that's nice but my body issues were something that had been burried under so much other stuff (well, primarily pain, massive crippling pain) that it took antidepressants and a lot of painkillers to get me to a point where I could even acknowledge the dysphoria.

So in my rankings of priority it's like.. pain/health is a big number 1 and body image is down at 2 with social transition waaaaaaaaay down the bottom because i'm already effectively where I wanna be there and there's only a few teensy little things i'd like to see change and figure probably will do so organically as I pass more anyway.

but doctors seem to think social transition should be this HUGE event and it just... isn't for me.
and they can't wrap their head around that and view my disinterest in rushing headlong into correcting pronouns and legal name changes as "reluctance"
it isn't reluctance at all, it's pragmatism.

Forms can wait. Especially during a DAMN PANDEMIC.

also to be frank, I think going full time is a much much bigger deal for trans women than it is for trans guys. I mean, you wear trousers and a nice button up shirt people just think you're a butch woman and don't bat an eyelid. There's less of a sort of black and white division there, it's less... obvious I suppose?
It doesn't even occur to people you might not be female. But I have better things to do than correct every random stranger who calls me "miss" you know? I want my coffee, I don't want to have to come out to the damn barista.