13 Things I Want My Loved Ones to Know About PCOS
Many of you have expressed that it’s really difficult to communicate with your loved ones about PCOS. Part of the issue is that from the outside, many of its symptoms can look invisible. Generally, it’s tough for people close to us to display sympathy for something they can’t identify with, see or understand. PCOS is so complex, and it can look very different from person to person. There may be a tendency to compare, or invalidation of what you’re feeling, especially when labs are coming back in “normal” ranges. In general, try focusing on clearly communicating a specific action someone is taking to make you feel unsupported. How is this making you feel unsupported? What is it triggering for you? What kind of words or actions would give you the support you need? Communicate that to your loved ones. If they have your best interests at heart, they should be eager to learn and adapt. If they can’t adapt, that’s okay because you took a step in the right direction by communicating. It’s part of the process to learning how to set boundaries and take care of yourself.
I compiled this list of 13 things I want my loved ones to understand about PCOS. I’ve found that when I make myself vulnerable, let my loved ones see what’s really going on internally and how I’m feeling, they are more understanding and receptive. There is such strength in vulnerability, and I hope what I have laid out here helps you think about productive methods of communication to your loved ones about your PCOS symptoms.
1. My doctor can’t “just fix it”
What I'm dealing with is an incredibly complex syndrome. It's a whole body condition - it affects every area of my life - mind, body, spirit, and emotions. Scientists still do not even know the variety of factors that cause PCOS, and research is underfunded. It's heterogeneous and can look so different from person to person. There is no "PCOS pill" and there is not a cure, just a bunch of individual band-aid symptom treatments, from contraceptives to diabetes medications. Physicians who may diagnose us often have the best intentions, but medical schools traditionally teach very little about PCOS, and the research is so behind. What they have in their toolkit is very limited to help me with my PCOS. Doctors who take a multidisciplinary or interdisciplinary approach often don't take my insurance and are incredibly expensive. It’s really hard to know where to turn, and it’s incredibly frustrating to feel so uneducated about my own body.
2. I am my own worst critic
I am hard enough on myself and have to learn how to soften the language I use internally. I don't need you to be hard on me, too. If only you knew the internal dialogue I have with myself, the way I scold myself, and how much I loathe that I can't be a productivity machine anymore. When you judge me, it validates the hateful things I tell myself and sends me further into a painful spiral. I am not lazy. I am working on myself from the inside out to live up to my fullest potential. I wish you would be a source of love and support instead of making me feel judged. Tell me you believe in me to help me believe in myself.
3. Infertility scares me
I don't even know if I want one, but I'm scared I'll never be able to have a child because of PCOS. I'm scared if I have a miscarriage, I won't be able to handle it. I'm scared I'll die during childbirth. I'm scared I'll never make you proud because I couldn't give you a grandchild. I'm scared all of my friends will alienate me or see my life as less important if I can't have kids. I'm scared everyone will see me as less of a woman.
4. I’m sorry emotions are difficult for me
I'm sorry I can get irritable and moody. I'm sorry I forget to answer texts, or cancel plans at the last minute. PCOS causes a disruption between our nervous and endocrine systems, making it difficult for the body to interpret hormones and chemical messengers in the body. It affects regions of the brain, like the limbic system, that help us with emotional processing and behavior. And, many of the common medications prescribed for PCOS can actually make this worse. I love you and I hope you can give me grace for when I act irritable or aloof in an unjustified way. The first step is awareness and I promise you I’m working on it.
5. It’s hard to know what’s behind my weight struggles
Weight is such a struggle for me. Please recall this is a syndrome. Even doctors are confused about what's going on. My difficulty with losing weight can stem from so many different factors, and even a combination of many of those factors. It's really difficult to pinpoint the issue(s). Chronic inflammation, insulin resistance, elevated stress hormones, exposure to obesogens and endocrine disrupting chemicals, elevated androgen levels, general hormonal imbalance, and so many more factors could be working against me at any given moment. And the target keeps moving since our hormones are constantly fluctuating. It is beyond frustrating and often I feel angry, and there are days when I feel flat out hopeless. I have extreme food anxiety and it can be crippling. Please don’t contribute to these negative feelings through criticism.
6. I’m working on how I see myself
I have serious self-image issues. I can remember being called fat by a classmate for the first time when I was five years old. It continued through college. My doctors constantly told me to lose weight. My grandmothers would grab my belly. My weight ostracized me during the most formative years of my life. It made me feel unworthy and like I was supposed to hide. Wear only black because it’s slimming. Wear oversized clothes to hide a bulge. Grow my hair as long as possible so I could use it to cover parts of my body and face. Avoid situations where all eyes will be on you. But I'm choosing to not let that be the case anymore. I'm choosing to focus on the fact that my body is a vessel for me to live my life, not the thing that defines me. I hope you agree with this and can support me as I work to shift my mindset.
7. You’re pushing me away
You're pushing me away. Every time you call yourself fat, call someone else fat, or comment on my weight, I feel disordered eating habits bubbling up inside of me. Every time you try to tell me what to eat, or chastise yourself for eating something “bad”, I feel unsafe. Every time you look my body up and down and snicker, do that to yourself, or to someone else, I want to run home and hide. Maybe you didn’t know about the way I’d try to starve myself, starting as young as 10 years old, but I’m telling you now. I feel like your love for me is predicated on whether I'm "skinny" or not. I feel like you see my value and worth as intrinsically tied to my weight. I've been working on detaching my value and worth from my weight for years. Please don't diminish my identity to how much space I take up. I am a whole person who has so much more to offer than what she looks like.
8. I’m so exhausted
I have spent my whole life trying so hard to ignore my fatigue and overcompensate for brain fog to push through to be productive. I have to stop. I'm scared you think I've failed, or am not living up to my potential. I'm scared you will not love me anymore if I slow down and let my body rest to be able to heal. Chronically elevated stress hormones exacerbate so many PCOS symptoms. I've been in fight or flight mode for so long. I need you to trust that I know what's right for my body, and I don’t want to feel guilty or judged for listening to my intuition.
9. PCOS predisposes me to anxiety, depression and other mental health issues
I struggle with anxiety. Those with PCOS are 3X more likely to suffer with anxiety and depression. It means sometimes I need to put up communication boundaries. Sometimes I need to shut out the world. Sometimes I feel so overstimulated I start hyperventilating or I can't breathe. Some days I feel like I physically cannot leave my bed. Some days a sense of impending doom or dread overtakes my mind in a way that I cannot put to words. It’s like constantly living life right at the edge. I'm sorry it means that sometimes I don't answer texts or I cancel plans at the last minute. It doesn’t mean I love you less.
10. PCOS has held me back. No one hates that more than I do
The worst thing about PCOS is feeling paralyzed by the ways it has trickled into every area of my life. My anxiety and my body image issues have held me back in so many ways. From meeting new people, making new friends, taking risks, to speaking my mind. My anxiety creeps into my dreams, and I can't turn off my brain. I want to sleep, but my heart races. I have so many ideas I want to execute, but executive dysfunction holds me back. When I start to execute, my self-doubt creeps in and I assume failure. I crave connection, but feeling unseen or unheard about my concerns makes me pull away. I'm scared to ask for help because secretly I believe I'll just be disappointed. I feel I have to "make up for" the person I am or who you see me as and chase success and validation to prove I am enough.
11. Things are going to change
I need to make changes to my life to best manage my symptoms, and it stresses me out that you might not like the new me. I need to know that you're open to finding new ways for us to bond that aren't restricted to just eating or drinking together. You might not like that I start to say no, set boundaries, or that I prioritize what's right for me. I'm scared it means I'll lose you, but I hope that's not the case.
12. Please don’t rush me through this process
This journey is going to take time. I'm learning more about my body every single day, and I'm making progress, but this is going to require patience. I’m about as patient as a three year old waiting for a chocolate chip cookie but I can't expect to learn how to manage my symptoms overnight, as much as I want to. If I could fix everything right now, I would. Feeling rushed by you is not going to help me manage my own expectations. I was told to "lose weight and take birth control" and to come back when I wanted to get pregnant. I didn't get personalized instructions on how I need to change my life, so I have to figure it out for myself.
13. PCOS is lonely, and I hope you can be there for me
PCOS can be an extremely isolating and lonely condition. One day I walked into my doctor's office and found out I have a lifelong condition that predisposes me to diabetes, infertility, cardiovascular disease, weight gain, hair loss, mental health and mood disorders, fatigue, issues sleeping, and so much more. But I don't want a pity party. I don't want you to treat me like a little feather. One of the things I love about my PCOS is the fact that it has made me resilient. All I ask is that you try to understand me and to forego your judgments. To just be there for me. The best way you can support me and help me know I'm not alone is to forego unsolicited advice, listen, validate what I'm feeling, and stop making assumptions that I'm not doing enough. Just spend time with me, and ask me how I want you to support me. Maybe I want you to hold me accountable for eating nutritiously, or working out. Maybe I want you to suggest new opportunities or meditation classes. Maybe I just want to sit on the couch together and watch a movie.
Remember:
Communicate how specific actions make you feel, why, and what you want instead from your loved ones.
To reiterate, focus on clearly communicating a specific action someone is taking to make you feel unsupported. How is this making you feel unsupported? What is it triggering for you? What kind of words or actions would give you the support you need? If they have your best interests at heart, they should be eager to learn and adapt. If they can’t adapt, that’s okay because you just took a step in the right direction by communicating. It’s part of the process to learning how to set boundaries and take care of yourself.