Thursday, January 18, 2024

For the last five years, I've been dealing with a chronic condition known as PCOS. Like many diseases, it didn't come from nowhere, and I've found myself reminiscing lately on my life, family history, and childhood experiences as they relate to my health and well-being. I've also been thinking about the challenges I've experienced in trying to manage PCOS, and ways I'd like to be better about advocating for myself.

My brain can only piece together my health if I start where I began to notice a problem. In truth, I can honestly think of problems way before my 20s, but for the sake of time, that's where I'll begin. I married young and had children young too. This has come with its challenges. In many ways, having children in my early 20s made it difficult for me to finish my education and begin a paid career. The echoes of that choice have affected my confidence, earning power, and eventual retirement, but that is a discussion for another time. What know now is that having children in my 30s would have been much more biologically difficult - if not impossible - than it was in my 20s.

I still struggled to conceive both of my children. My first required nearly 18 months of patient trying, scheduling, waiting, and grieving. My infertility ultrasounds from this time showed ovarian cysts that I wish were paid more attention. I miraculously tested positive the cycle before I was meant to start Clomid. I worried my second would take equally as long, but by some miracle I conceived within a couple of months. This pregnancy was plagued by extreme morning sickness and antenatal depression, which lasted the entire pregnancy. But it wasn't until after the pregnancies were over that my health really took a turn for the worse.

Education on postpartum mental health and mental health in general has come a long way in 10 years. When I first was struggling with depression and OCD, public education and opinion on mental health was just beginning. I had no language to communicate to anyone just how much I was suffering. The experience was intense. Just before I was lucky enough to get professional help, I teetered dangerously on the precipice of suicidal ideation. The first intervention was first: a genetic test to assist in finding a medication instead of playing roulette with anti-depressants. After reviewing my results, I was prescribed  a medicine called Luvox. I was told by my psychiatrist that it was an SSRI formulated specifically for OCD. It was paired with a special B vitamin called methylfolate. It also turned out that I have a genetic mutation called MTHFR, which in layman's terms means my body lacks the ability to turn raw vitamins into the necessary components it can use. B vitamins, as it turns out, are really useful for mental health, and my body was basically starving for them.

For a few years, my body took good care of me as I adjusted to these medications and tended to my mental health. I continued to try my best to take care of it back by being very health-conscious for the years I was conceiving, nursing, and raising my kids. Because of my lactose intolerance, I chose to strictly follow a vegan diet for nearly 3 years. When I moved away from Arizona, my ability to find convenient healthy options and cook my super time-consuming and complex foods was limited by the area I lived in and housing arrangements.

During intense trauma counseling, I picked up a book called "The Deepest Well: Healing the Long-Term Effects of Childhood Adversity" by Nadine Burke Harris. Harris discusses how adverse childhood experiences (ACEs) can affect health and well-being throughout a person's life. The book outlined research that shows that if a person has more than 4 ACEs, they become considered "at-risk" for a lengthy list of diseases. I have the honor of claiming 5 ACEs, which places me solidly in the at-risk category. This book, along with the research around epigenetics (the way trauma/disease is passed down in families), opened my eyes to understanding my health more holistically and gave me an appreciation for the challenges I was up against.

It was around this time that I stopped bleeding. My monthly cycles just... completely stopped. I would go four, six, nine months without bleeding. I told myself that this was normal after having children and nursing, but I used that same excuse for nearly five years while other symptoms began to make themselves known. I started to gain weight, see a *super attractive* increase in my amount of body and facial hair, and sleep for 12-13 hours per day. I knew something was wrong. I began to research my symptoms and soon learned that most of them were in line with a condition known as Polycystic Ovarian Syndrome (PCOS for short).

I began the process of seeking a diagnosis, but it took me a long time to find a doctor who took my concerns and my symptoms seriously. 3/4 of the doctors I went to wanted to prescribe birth control to manage the symptoms, but I had read that birth control was only a bandaid and did not treat the root cause of the issue. They did the obligatory blood work but insisted that everything was "normal," and suggested that I lose a few pounds to see if my symptoms improved. I was lucky enough to find a doctor who finally listened.

My first appointment with her blew my mind. Not only did she take my concerns seriously, but she walked me through my bloodwork from the previous doctor and explained why the levels were indeed NOT normal and how different aspects of my body were creating the symptoms. I told her about the weight loss suggestion, and she validated how hurtful that could be, but that also weight loss was something that was both caused by and contributed to my symptoms. She took the time to explain triglycerides, Alc, cholesterol, all in a way that I understood. PCOS causes weight gain because PCOS causes insulin resistance. In essence, it affects the way the body processes and stores sugar. This symptom was especially exacerbated by my family history of both types of diabetes. But the magic of weight loss is that insulin resistance is decreased when weight is.

Then she walked me through the exact kinds of food that increased and decreased insulin resistance. I almost cried because everything I had relied on during my years of veganism (lots of gluten, plenty of sugar) were primary contributors to insulin resistance. Additionally, she explained that PCOS is informally classified as both a chronic disease and an autoimmune disease. I know this sounds like a sadness disaster tornado, but for me, it was so validating to have all the symptoms I was experiencing explained and validated. There was a huge part of me that wanted to scream, "NO EFFING WONDER I FEEL LIKE SHIT!" My doctor walked me through foods that again, increase and decrease hystamine (inflammation) in the body. Then she provided me with a beautiful blue binder with recipes and guidance all printed out for me to use.

Then, she explained that weight loss alone was not enough, and that the hormonal side needed to be addressed for the symptoms to be managed properly. Instead of birth control, I on a whole slew of vitamins and medicines that I felt good about. One of them is called a troche, which manages most of my Big 3 hormones. I like it because it has a "HAZARDOUS DRUGS" label on it. It makes me feel kind of badass.

I followed the meal plan strictly for 6 months. This meant no gluten, no dairy, no sugar (except for fruits, maple syrup, and honey). I took all my medication. I trusted my doctor because even though she advocated for weight loss, she backed that up with research (she had written her doctorate dissertation on hormone management and autoimmune disease), bloodwork goals, and an avenue for success. In short, she gave a really big f*ck about the issue and treated it from every angle. I saw huge improvements in my mental and physical health. My periods returned. I slept 10 hours instead of 12. My bloodwork looked absolutely amazing. Triglycerides & Alc down. Good cholesterol up. Hormones stabilizing. And then the shame caught up with me.

I had absolutely no language for communicating with others about my disease, about my symptoms, or about my treatment. This meant that I quietly managed most of it on my own. I tried very hard not to bother anyone with it because I didn't want to use the word DIET. This meant that I didn't make my dietary needs known at group gatherings. I sometimes went hungry at family meals because surprise! Literally everything had gluten, sugar, or dairy in it. So I started bringing my own food everywhere, which made me feel like I was back in my vegan days (with the perceived moral superiority and all.) I also didn't know how to communicate with my children about it I don't want either of them growing up with a "dieting" mom. 

On top of this, after 6 months my weight loss became noticeable, and many people commented on it. Every person was kind and celebratory. Some were curious. But the attention made me uncomfortable. I had worked so hard to separate my worth and value as a person from my appearance, and it undeniably felt good to have people tell me "You look great!" But I had no idea how to communicate that I didn't lose weight to look good, I lost weight to literally stop hurting & not die. I didn't know how to communicate that my avoidance of dairy, sugar, and gluten wasn't because I thought I was better than anyone - it was because that's exactly what my body needed to feel better. Slowly I began making exceptions to my dietary restrictions just so I could blend in and not confront the constant commentary about my body. Exceptions turned to the norm, and within 3 months my bloodwork reflected increased trigylcerides and A1C, and I was back to periods every 6 months and everything hurts & I'm dying.


For my entire life, I have played down my needs to the result of believing I don't have any. Therapy has helped a lot with that. I'm at the point in my healing journey that I actually don't just want to be alive, I want to be happy. I want to feel good because I can feel again. And feeling good requires that I listen to what my body wants and needs. And my body wants to be here in this incredible world for as long as I can be. This means my body wants/needs more nourishing foods that support her in doing the best she can, and less of the foods that get in her way.

Eating this way has its ups and downs. Nothing sucks more than eating a stupid soup when everyone else at the table has it with a fresh baguette and herbed butter. Nothing makes me more ornery than every single chicken broth in the store having sugar in it (WHYYYYY?!). Sometimes a girl just wants her burger with a bun, goddamit. BUT literally nothing beats the moment of seeing those bloodwork numbers come through beautiful and knowing my body is doing great.

I don't know any better today than I did a year ago how to communicate that I eat the way I do so I can avoid daily injections and the super scary stuff I've seen my family members deal with. I think I need to create clear and strong language to communicate my needs. Something like:

  • Instead of "can't eat that" or having a "sensitivity," I'm literally going to tell people my body can't process it and it makes me sick.
  • I'm going to share my dietary restrictions when hosts for parties or gatherings ask for them.
  • I'm going to actually ask ahead of time what is going to be served at events, and plan accordingly.
  • I'm not going to eat my home-brought snack/meal alone in the hallway or car. I'm going to either make enough to share or eat my serving at the table like a normal person.
  • If someone asks why I brought something else, I'm just going to say "This is what my body needed to eat today."
  • If someone comments on my weight loss, I'm going to say "Thanks, I just did a really big poo," and make it as awkward for them as they make it for me.
  • If someone comments on me not eating something/bringing something they feel makes them "bad" or "less healthy" by comparison, I'm going to say "If you call me a good girl, I'll enjoy it more," and again, make it incredibly uncomfortable for everyone.
I feel good about those. I'm going to practice them in the mirror so I can deliver them on cue. And for anyone who wonders now what's okay to say about my body and what is not? Comment on my outfit. Comment on my hair! Comment on my makeup, or my great boobs. I don't mind you looking, and I don't mind if you like what you see, or if you say so. But for gods' sake, please don't comment on my weight. Unless you really do want to hear about my big poo.

Trust me, I want to eat the same cinnamon rolls and cookies and hot Cheetos and pastries and breads and cheese you do. But I'm working really, really hard to stay alive and to stay well. I have a lot working against me (remember those genes and ACEs?), but kindness and thoughtfulness makes the way easier. You made gluten-free cookies just for me? I'm definitely trying one, even if it does have dairy/sugar. I might only have one, but the thoughtfulness of the whole dozen is contained in it. You put the cheese/cream on the side? THANK YOU. You have honey out with the tea? Thank you. You found a chocolate with no dairy and sweetened with date sugar/honey/syrup/coconut sugar? Just tell me the name of it and I will love you forever.

If you made it this far, I commend you. I know this isn't necessarily the most exciting read ever, but I am grateful for a place to share my thoughts and experiences as I'm trying to navigate and (with any luck) improve my chronic illness. I have more thoughts on baking/ancestral recipes in this same line which I'm sure I will write soon. But until then, and even still, thank you for listening, thank you for understanding, and thank you for loving me.

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