Speaking out about Kallmann's Syndrome

I occasionally go to the Facebook pages or other sites that discuss Kallmann's Syndrome, a genetic condition I have.  As a middle-aged woman who has never knowingly met anyone with Kallmann's but who has corresponded a bit with others online about this disorder, I do not consider myself an expert in KS but I am a "survivor," if you will.  I am sometimes floored by what people write about it; all I can conclude is that their journey has been much harder than mine.  Perhaps I am just too clueless to know how hard my journey has been, or I lack imagination to envision what life would have been like without KS.  Perhaps being ignorant of the wider community of KS persons was to my advantage.  The Internet makes cross-national communication on these matters so much easier, which is a good thing, but it also gives a voice to people who perhaps should think twice about what they post.  I also have to conclude that this is generally harder on men than women, but only very slightly.

Some misconceptions:

1.  The biggest one is that we are "intersex."  I have never felt like a was born in a man's body; I have all the parts, just no gasoline, so to speak.  No hormones.  Nothing to make the parts work.  And I can't smell (anosmia).  Calling a person with Kallmann's "intersex" seems just plain cruel, adding insult to injury; it is saying that you can't get the therapy to live fully as your sex or gender (I know there are differences in those terms, but I won't get into that now).    Along with not having female hormones, I have no male hormones; I have no male "body" parts, and I would assume this is is true of 99.9% of KS persons, so how can we be intersex?

2.  That the only problem we have is infertility and not being able to smell.  Ah, I wish it were that simple.  Because while we are not "intersex," we are also not like everyone else.  We can pretend to be. (heaven knows that until the last couple of years since I have "outed" myself, I never talked about my problems in terms of FSH and LH, or what it was like to not go through puberty normally).  But we just will always have this disconnect.  I have often thought I shouldn't write fiction because I didn't know what normality was like!  I have fought all my life to be like everyone else; it is only in the last few years I finally accepted that I wasn't but I was still capable, successful, and not-to-be-held back.  KS and low self-esteem are partners.

3.  That anyone who looks really young for their age has KS.  Well, we do, but it eventually catches up with you! I wish my skin didn't have crows' feet like everyone else's!

4.  That we are part of the LBGTQ (and other letters?) community.  Perhaps some are and perhaps some want to change their gender, but that is not part of the diagnosis.

5.  That doctors understand this condition.  I am waiting on that one.  The one value of being past menopause is that it doesn't really matter to me personally if doctors understand.  But I can feel for the younger persons.

6.  That it is the same as Klinefelter's.  That's just ignorant.  

I do not pretend to think my "journey" with KS is anyone else's.  Thankfully, it did not get passed down to my offspring, and I pray not to his, although from what I read it is sometimes.  I don't wish this on anybody.  But I think that today the treatments are better than in the past.