deeply appreciate your work and resources. i'm another one of those people that while reading through your intersex guide discovered i heavily relate to a variation, but i'm unsure as to what to do now (if anything?) it's a chromosomal variation, which is giving me more pause, as that sort of thing can only be known with a karyotype test, right? it seems like it's a magic answer to the question of "why does my body have these traits? am i just unlucky to have these health complications, and these traits don't mean anything, or are they connected?"
i really struggle with knowing when to seek medical care, especially when nothing is wrong. i'm not sure how doctors work in general, as i was medically neglected growing up and still feel like i'm missing a lot of knowledge, even though i am... not so young anymore.
in any case, thanks so much for any advice you might be able to pass on, and thanks so much for your blog in general! it's really a wealth of information!
Oh, hello! So happy that our intersex guide could over you some introspection.
So, yes, chromosomal variations can only be identified through karotype tests, which can unfortunately be very difficult to get depending on where you live and how the medical system works wherever you are from.
When it comes to chromosomal variations, unless you have clear differences in your other sex traits (genitals, reproductive organs, sex hormones, secondary sex traits, etc), it can be hard to tell if it's specifically an intersex variation you are experiencing, or if it is another genetic variation at play that doesn't inherently affect your sex traits (ie; Down Syndrome.)
(This is yet another reason why we so strongly believe diagnosing sex and physical conditions should become a regular practice, and everyone should get free non-invasive chromosome tests, hormone tests, internal organ scans, etc. Because not all sexual pathways or disabilities are visually diagnosable, and people should be fully informed of what is going on with their body, as well as being aware of what traits commonly co-occur with their anatomy and genetic makeup!)
Now, whether or not you seek out a karotype test depends both on how medical care works in your area (whether its free or you have to spend money, whether you have to be on a waitlist, etc), how important this is to you, and also whether or not you believe you'd be at risk by having a diagnosis on your records. Perhaps research who is allowed to access your diagnoses in your location? A lot of locations only allow you, your direct doctors, and your caregivers (if you have any) to access your records - which would be the ideal scenario - but thats not the case everywhere, as far as we're aware.
But even if you get diagnosed, your direct doctors may mistreat you based on said diagnosis. Intersexism is an ongoing issue worldwide, and with chromosomal variations, this often manifests as infantilization or demonization.
Also, whether or not you seek out a karotype test also has to do with whether you believe it's affected your sex organs in any way. For example, people with variations such as mixed gonadal dysgenesis (XY/XO chromosomes) are at an increased risk of gonadal tumors. Its good to just keep an eye on these things, as tumors or cancers and other internal complications can go undetected for a long time, so if you believe that your chromosomes may have affected your reproductive organs, that could be an additional reason to consider getting a test done!
Good luck with whatever decision you make! If you do decide to check your chromosomes, and it comes back that they aren't intersex in any way, make sure not to beat yourself up over it! There is absolutely nothing wrong in the slightest about questioning if you are intersex! The journey still offered you a unique experience, and that's nothing shame worthy.
