i have been thinking, and reading, and dealing with my diagnosis of Polycystic Ovarian Syndrome (PCOS) quite a bit lately. mostly, i have been feeling down and depressed and hating my body and hating my invisible disease that causes visible symptoms. and i have also been feeling thankful for living in canada. American health costs money - lots of money. living in the USA means paying for healthcare through insurance or through your pocket. often the specialists like endocrinologists or reproductive endocrinologists don't accept insurance and patients pay out of pocket, submit to their insurance company (if they have health insurance) and hope that some of it is covered.
but what about the hundreds of thousands of women who can't afford to do that? or who don't even know that they have PCOS?
these thoughts make me feel lucky to live in a country where i take for granted that i have an appointment with an endocrinologist. even though i have to wait 6 months for the appointment, the government will pay for me to see her and she will monitor all my hormonal and endocrine symptoms and ailments.
yesterday i was listening to a podcast from PCOS Challenge (http://www.pcoschallenge.com/) that was about PCOS and depression. it was really interesting. Dr. Gretchen Kubacky (http://drgretchenkubacky.com/) was talking about PCOS as dealing with loss ...
- loss of femininity
- loss of reproductive health
- loss of womanhood
- loss of health
- loss of being "normal"
- loss of freedom to eat and drink as you please
these are things that i have been dealing with but wasn't able to put a name to it. i wasn't able to call it "loss" because i am relatively healthy, live in a lovely home, have wonderful friends and family, a good job, and no real reason to feel down and upset about my PCOS diagnosis. but listening to Dr. Gretchen, and listening to the idea of loss in relation to dealing with a diagnosis made so much sense to me.
i can't eat the way other people eat and feel good. i just can't. and yet, i am eating however i want and feeling like crap all the time. sugar feels good in the moment, but affects me for hours afterwards.
i think the hardest symptom for many of us PCOS cysters is the hair loss. you can recognize us by our thinning hair and receding hairlines. and it sucks more than i can put into words. the other symptoms that suck are anxiety, brain fog, irritability, poor sleep, and depression. yay! party time!
the idea of the loss of normality, the loss of health, the loss of my fertility ... all of these things have a bigger impact on my mental health than i was aware.
when i was first diagnosed 4 years ago, i followed the doctor's orders, i read, and learned, and i felt hopeful. and then over time, as my hair continued to fall out, i continued to gain weight, i continued to not get pregnant ... i slowly began to become lax on the doctor's instructions. if following the nutrition guidelines wasn't helping then what was the point?
now, 4 years later, i am slowly becoming more aware of how impacted by this diagnosis i really am. and how much it affects all aspects of my life. my goal now is to go back to my reading, and learning, and seeking out expert advice. and most importantly, telling people about PCOS and how it impacts me.
i know that this post isn't exciting, and isn't full of pithy humour and advice, but for my cysters out there, i think this post is important. and it is part of owning my story and explaining where i am at on my journey. being vulnerable by sharing this part of my story takes away the shame of it.
be kind to yourself,
xoxo
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