Sunday, 26 February 2012

Self-medding: time for a grown-up conversation

    "If I was starting transition now, and knew what I know now, I would self medicate. Absolutely no question".
    I read this quote a while back, referring to the practice of self-administering hormone treatment without any prescription. It came from someone well-known in this sphere whose stance I respect a lot. And it struck me, how unusual it is to see someone saying something like that in public, online for all to see.
    You see, what normally happens if someone mentions self-medding on the internet is this: they are drowned out by a chorus of people anxious to point out that it's generally frowned upon, all sorts of nasty things can happen to you if you do it, it's illegal, it'll affect your future treatment, etc. etc. If the mention happens on a moderated forum or mailing list there's a good chance it'll be deleted too, because We Don't Encourage That Sort Of Thing.

    Y'know what? We know.

    We all know self-medding is a risky business, we don't need to be told again and again. What we do need within this community is the chance to talk about it in the open, because stifling any attempt to do so is stopping a conversation  in this community that both we and our medical practitioners need to have.
    My local psychiatrist surprised me a while back when he told me that as many as 80% of his patients self med with hormones they've bought from the Internet. I knew a few people who were open about it, but never realised it extended to that many of us.
    So, just out of curiosity, I asked a few friends. Got some funny looks, but assured them it was only for intellectual interest. My wife would not thank me for self-medding and I don't want to lose my fertility just yet, those are pretty good reasons not to do it if there weren't plenty of others.
    I was reminded of a 1950s British film in which one of the protagonists - a terribly respectable middle-aged lady author - goes into a seedy pub to try to buy a Mickey Finn to incapacitate her blackmailer. She ends up trying to buy one from a man who turns out to be a policeman, saving herself only by claiming to be researching for a book. "Pssst - Where can I buy some Estrogen?".
    If you ask people why they self-med, it always comes down to the gatekeepers. The medical profession don't make it easy for us to get our hands on the hormones for many very good reasons. Aside from the need for safety under medical supervision there are some people who seek hormones for whom they are an extremely unsuitable treatment. There are many arguments passionately made as to how the doctors could speed up their service and how their attitudes could be updated, but why they work the way they do is entirely understandable and in the best interests of their patients as they see them.
    The trouble is, in doing this it seems from this viewpoint that the gatekeepers encourage self-medding. This isn't a tacit encouragement, but it happens in two ways. By raising the barrier to legitimate prescription they increase the incentive to simply bypass them. Thus they simply never see a great swathe of non-transitioning self-medders who don't need their other services. Then when they do encounter someone who self-meds their concern is to get them onto a safely prescribed dose as soon as possible so they forgo the usual RLE test before a prescription is issued. This encourages people at the start of transition to self-med while on the waiting list. I have more than one friend who has done just that, and I believe the quote at the start of this piece referred to it as well. Why spend an uncomfortable period as a bloke in a dress when you can hit the ground running?
    This relaxation of the RLE requirement has a rather iniquitous parallel. Those patients who self-med are rewarded with a fast-track, yet those patients who present to NHS clinics having obtained legitimate hormones by private prescription seem to be required to come off them and serve the full RLE without hormones. I have personally encountered more than one person who has experienced this, as well as a couple of well-publicised people in the blogosphere. The dichotomy between a reward for dodgy hormones and a punishment for legitimate hormones is startling.
    (Edit: Following clarification of the legal position in the UK, removed paragraph relating to dire punishments for those importing hormones. My source turned out to be wrong. It seems it's illegal to import testosterone in some circumstances but not estrogen. Well, those of us on the MtF side of the fence know testosterone is the dangerous one! :) )
    I wonder if I'm alone in thinking the situation I've outlined above is a bit of a mess. A mess without clear fault or solution at that. It's difficult to fault desperate people for self-medding, equally you can't blame doctors for doing their job, however frustrating it might seem at times. But if it's a mess without a solution, one thing definitely makes it more of a mess. The self-censorship within our community whenever the subject comes up isn't helping anyone.
    I'll repeat the point I made in the title of this piece: it's time for a grown-up conversation about self-medding.

7 comments:

  1. It is time for the medical "profession" to get their act together and have one clear set of rules and stick to it!

    That set of rules should never have insisted on RLE without hormone help, that is sheer madness.

    Long ago hormones were prescribed to she as a diagnostic tool! If you were not serious about transitioning you would soon want off because of the effects...

    When I was born the whole of America woke to front page news of a glamorous woman stepping off a plane from Europe, she had been created from original boy body parts. Here we are sixty years later and these so called professional doctors still have not learned much.

    Three generations of us have suffered while they procrastinate and get tripped up by biased bigots and they wonder why in desperation we who are better informed have to find our own way. I wish I had known where to get hormones decades ago, it would have saved me decades of misery.

    When in hospital for my recent operation I only met one other patient, she was of a similar age to me and had gone seeking help when twenty like me. She lived in a country with no facilities to help those like us and still has none so she had had to fly to Britain, she had self medicated from age twenty and you would never have known she had not been born a natural female. She had had to wait thirty five years to be able to repair the physical defect!!!

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  2. It's time for the Reid protocol is what it's time for. Yes, there are people who shouldn't take exogenous endocrine intervention, but they are typically the best judges of that. Further, delaying transition when people are at a crisis-level of dysphoria is clearly life threatening. This is a drug that kills 4 out of 100,000 patients (Deep Vein Thrombosis kills in about 20% of cases) while low-dose Aspirin, also taken because it ameliorates a life-threatening condition, kills 10.4 per year.

    Given a 98% satisfaction rate for transition medicine, I would be fine with a treatment that cured forty-nine, (or even just nine) and afflicted one who simply needed the inverse treatment as a cure.

    There is no legitimate reason for EEI to be more difficult to procure for trans people than HRT is for cis people that is not couched in cissexism either externally or within the community. None.

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  3. You have pretty much touched all bases with this one Jenny. One of the main reasons, if not THE main reason why people self medicate is because of the slow route preferred by the NHS. The idea of going through RLT without hormones is just plain stupid. The RLT is part of the transitioning process as far as I am concerned so there is a legitimacy in prescribing hormones. Psychiatric screening and assessment should be enough to filter out those who shouldn't be transitioning but sometimes they get it wrong. It's all about safeguards though and the excuse to protect us from ourselves. Is that a legitimate claim? I self medicated just prior to my first appointment with the psychiatrist who promptly prescibed my meds. What else could he do? I did go the private route by the way and completed the physical transition within eleven months. There should be a fixed set of rules to adhere to of course but what to suggest?

    Shirley Anne

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  4. I have to admit I may differ from you all on the subject of RLE without hormones. Sure I'd prefer the hormones first if I transition, but I've made my peace with the idea of going full time without them if that's what it takes.

    I have a friend who put it something like this: which is more important to you, to have the hormones or to be a woman?

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  5. I agree that insisting people have their RLE without hormones is more than a little daft. My experience, however, has been the opposite – I've been prescribed hormones without an RLE. I'm even being encouraged to retain some 'male' time for the benefit of my wife.

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  6. Interesting post.

    Here in California, it's pretty darn easy to get the meds legally and cheap. Since that is the case, any thoughts of self-medicating have long since left me.

    Earlier in my life, I did try various organic options with absolutely no effect. I suppose the treatment I thought of most and nearly proceeded with was the immediate removal of the primary source of T.

    But, back to self-medication, I've read enough about it to convince myself that it can be done safely if you do your research first.

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  7. My beef isn't with self-medding itself, though I don't think it's a wise choice necessarily. Instead it's with this emperors-new-clothes censorship in the community. If everyone's doing it what's the point in not talking about it?

    The norm here is no hormones without RLE. I'm impressed you've managed to wangle another route Angie, well done!

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