Shelby Eckard

“You are pretty, are you sure you have polycystic ovarian syndrome (PCOS)?” As I read it, I immediately was disappointed that I wasn’t complimented on something worth praise, like my wit, my advocacy or my sense of humor. Then, I got angry – really irate. “I’m sorry. What does PCOS ‘look’ like?” Before I even looked up to the response, I started firing off thoughts this person needed to know. Things like how common it is for people with PCOS to feel un-pretty because of the symptoms that steal things which are supposed to make them feel beautiful. Or how sad it was to have such a narrow view of PCOS. I thought hard about supplying a long list of the million beautiful diverse humans I’ve met with PCOS who hop right over “pretty” into downright gorgeous, and it has far more to do with their soul than the body they’re in or a diagnosis they were given. But instead I decided, “Let’s just hear them out. Maybe we can have an educational discussion.” The response? “PCOS doesn’t seem like a big deal. You cover it up well, always smiling — that’s all.” Not a big deal? Aren’t we told this far too often? Aren’t we so often oversimplified? “It’s just a weight issue.” “I mean, just come back when you want a baby or hey, adopt!” “If you just lost some weight this wouldn’t be an issue.” It’s exhausting. Utterly, completely, devastatingly exhausting. So this message is for anyone who’s thought PCOS isn’t a “big deal” or wants to see how un-pretty PCOS is. PCOS causes acne so bad that I cancel plans because I’m too exhausted to try to cover it. PCOS causes bloating so bad that I get referred to as “expecting” on the regular. PCOS makes trying to have a baby feel like “work,” and makes relationships strained and loved ones feel far away. PCOS makes my hair thin and fall out, and the stress of it all causes it to thin more. PCOS triggers so many anxiety and panic attacks that my therapist has me on speed dial. PCOS makes my body function at a level metabolically lower than other women’s, making me have to work 10 times harder. PCOS is so chock-full of stigma that no one talks about it so we all tend to feel desperately alone. PCOS is not a public health priority, so my doctors label me as “lazy,” and someone who needs to “just lose weight.” They ignore the other critical implementations it has on my life beyond my body mass index (BMI). PCOS makes my life physically, mentally and emotionally un-pretty. The only thing “pretty” about PCOS is that smile on my face, because PCOS sucks, but I try to manage it as best I can. And I have to show others that for me, PCOS doesn’t define one thing about who I am, unless I let it. PCOS is a big deal. So let’s start talking about it. PCOS affects one in every 10 women. Why is this not talked about more? To the women who are struggling, please know you are not alone. You are stronger than you know. You are beautiful, beyond any person’s measure. You are worthy of respect, understanding, proper care, education and resources. You are not a failure because society has failed to recognize this battle. You are brave for sharing your story, and it needs to be heard.

Listen to me right now. People living with chronic illnesses and who are considered medically fragile can read. We can see your social media posts that say: “You’re fine! It’s just a cold!” Or: “Don’t worry! This only affects the old people and people with compromised immune systems!” Or: “This is a hoax!” Or, the most recent one I saw: “The coronavirus is doing a great job thinning the herd.” This is my son. He’s 10 years old. He’s an honor student. He’s kind. He’s smart. He’s empathetic. He’s the most amazing little boy I’m blessed to call my own. He’s also severely immunocompromised from years of chemo-strength medications and other drugs for treatment of his rare autoimmune disease. I want you to know when you make posts like the ones I’ve mentioned above, I read that as you don’t actually understand how this is affecting a community like ours. I read that as you’re selfish, because luckily, apparently, you personally don’t know someone vulnerable. I read that as this just isn’t important to you because it doesn’t directly and immediately affect you or someone you love. And how lucky you are that you can afford to be so callous, But this human? He’s part of my herd. He’s half of my heart. He’s invaluable and irreplaceable. So when you make jokes about “thinning out the herd” it says to me that this boy — this sweet, amazing little boy — and others like him are disposable in your eyes. A price to pay for your economic security and freedom. You can boast that it’s just “the flu.” You can say people are just being scared or paranoid. You can make jokes this pandemic will be used to “thin out” the population, but your message is lost on us. I’ll tell you one thing that’s more contagious than this virus or the flu — hate and cruelty. But you know what else is contagious? Empathy. Kindness. Compassion for others. All that means being aware of others, and more importantly, your impact on them. I get there’s a lot of panic and for many of you, you see it as irrational. But it’s not for me. Tonight, my son spiked a fever. He told me his throat hurts and he feels like he’s sleepy. I’m sure it’s just a bug that his immune system can’t quite fight off. I pray it’s not COVID-19. But the panic and fear is real. It’s so real to me that I’m crying right now writing this. I’m asking you, please take this seriously. It may be a slight inconvenience to miss sports games or a vacation, and I get that’s frustrating. I wish that was the only thing I was worried about. I am asking you this: please be kind. Please think before you judge others for being fearful. Please wash your hands. Please stay home when you can. Please listen to science and experts — not just the media and your friends on social media. And please be grateful that what may be a few weeks of inconvenience to you can help save lives like my son’s. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

“You’re a Warrior.” Am I? war·ri·or /ˈwôrēər/ 1. a brave or experienced soldier or fighter. Sure, if being a warrior means most months I see my doctor(s) more than friends. I wake up tired, most days. The kind of tired that reminds you living with this illness takes energy and every single thing takes more out of you than it should. I require more time and effort to do things that I used to do with ease, and every ache and pain reminds me of that loss, of who I used to be. I depend on medications, loved ones and far too many excuses to get me through the day. I desperately try to stay positive, despite every negative and painful reminder my body gives me, letting me know I am not in control. I smile and pretend I’m OK. I’m not OK. I’m angry. I’m so damn angry. I feel like I’m trapped in a body that I’m constantly at war with, and I regret ever taking it for granted. What I wouldn’t give for more good days. Less doctors, more friends. Less exhaustion, more living. Less time hurting, more time living. Because some days I’m barely doing that. And sometimes I get so damn angry. And I’m not going to tell anyone how to navigate their hurt, their grief, their loss of who they were. If being a warrior means fighting, I’m not always strong enough to do that. I’m not always brave. I’m going to tell you this: I think sometimes when you have been broken and hurting for so long, over and over, you become this master of hiding the pain because it’s exhausting, and you don’t want people to think you’re broken. But there comes a time when you hide it so well, that after so long people will assume you’ve stopped suffering. But you haven’t — you’ve just moved your suffering into silence. I’m done being silent. Because living with an invisible illness makes you feel like you’re constantly having to prove your pain and struggle is real because no one can see it. But when you scream it, you’re seeking attention. And when you hide it, you must not be suffering anymore, right? It’s OK to be angry, and it’s OK to let others know when you’re hurting. I’ve decided that my multiple chronic conditions won’t silence me anymore.

“Just lose weight.” “You don’t look like you’re sick.” “She’s probably just lazy.” “It can’t be that serious. I’ve never even heard of it.” “PCO…What?” “Maybe you can just adopt.” These are all things women with polycystic ovary syndrome (PCOS) are tired of hearing. Then there are common things women with PCOS think: “I feel alone.” “My doctor doesn’t even know what to do. How do I?” “I wish people knew more about PCOS.” “This isn’t fair.” “Why won’t they treat my condition, and not just my symptoms?” “Will I ever have kids?” “Why can’t I lose weight?” “Why is no one doing anything about this?!” Do you know 10 females? One of them probably has PCOS. They have heard or thought some of the above. PCOS affects one in 10 women. It can cause weight gain, infertility, hair loss, excess hair growth, anxiety and depression, and if left untreated can lead to life-threatening conditions such as diabetes, cardiovascular disease and cancer. But 50 percent go undiagnosed. Just walking around, feeling like they have this broken body, and not knowing what the hell to do to feel better. Then they go to the doctor and are told, “Just lose weight.” Every doctor treats the symptoms, and no one is treating the actual PCOS. Maybe this is because PCOS receives less than .1 percent of funding for research compared to other major health conditions. I’m tired of being told to “just lose weight.” I’m tired of feeling alone. I’m tired of having to educate my own health care providers because they don’t understand. I’m tired of meeting yet another woman who had the same, heartbreaking, draining experience of walking around feeling alone because no one talks about it. We deserve better. Are you mad enough yet? You should be. Advocates like myself and organizations like PCOS Challenge: The National Polycystic Ovary Syndrome Association think maybe it’s time we stood up. Maybe it’s time we stop letting them ignore us. Over the last three years, I have met thousands of women with PCOS. Amazing, brilliant, strong, resilient women. They are my family. And this magical thing happens when tired, mad, angry women get together. They get shit done. They make change. They empower others to do the same. So I am proof that one voice can become two, and then it grows and gets louder and gets stronger. And we will be heard. And each new woman I meet, it ignites me a little bit more. Because its not just for me. It’s for her. And you. And my daughter. And your daughter. All that to say, never think one small deed doesn’t make a difference.

I’m going to tell you all something I’ve never really talked openly about. Except once, two years ago in my polycystic ovary syndrome (PCOS) support group. l used to hate myself. I hated myself so much I didn’t want to live. So much so my mom had me hospitalized. Why talk about it now? Because it’s part of my story. A really dark part. I used to feel ashamed of it. I used to hide it away and try to forget it. And I do most days, except when people use mental illness as a snarky cut down of someone. It hurts looking back knowing now it wasn’t my fault. Mental illness runs in my family. Not that that is the only reason I was depressed. I wasn’t given the tools I needed to cope with my feelings before it got to that point. I was a ticking time bomb of instability labeled as a “moody teenager who didn’t like being chubby.” I felt like I was making things up because “girls with so much opportunity shouldn’t be so angry at the world,” but I wasn’t angry at the world. I wasn’t in control of my world. It was spinning and I wanted off. Even after I was hospitalized and sent home, it wasn’t spoken of. I felt shame for something I couldn’t control. It took my aunt dying by suicide for the topic to even be discussed in my family. I no longer feel depressed, yet I am aware of its triggers. I see a counselor regularly for my own well being. I treat my mental health just like I treat my physical health. I am not ashamed anymore. I learned that just like your body heals, so can your mind. Mental illness isn’t something that needs to be hidden in dark corners. It’s present in people you know in your everyday life. People you look up to. People you wouldn’t imagine. It’s hard and scary and lonely. Sixty percent of women with PCOS have at least one mental health concern, such as depression, anxiety, eating disorder, and are at greater risk for suicide. I urge you, if you are struggling – seek help. If you are facing mental health issues, share your story. It’s not shameful to be going through it. What’s shameful is making people feel like they are less than because of it. Why is this so important to women with PCOS? Because we already struggle with symptoms and issues that mess with our self-image and feeling of being feminine. We are under diagnosed, mismanaged, and made to believe this is our own doing. We are told that we brought it on ourselves and we can just “lose weight,” just like that. But it’s not that simple. Neither is dealing with anxiety and depression, and being told to just “be happy.” It’s a vicious circle of being told we are the cause of our own issues because our own peers and society, the very people who are supposed to care for our health, don’t even understand us. How are we supposed to cope? There is a very important reason I share the things I do. Not to warrant sympathy. Not to throw a pity party. But because two years ago, in the absolute depth of despair and feeling like I couldn’t ever deal with any of this, I decided to share my story online. And it was hard. And scary. And people judged. They still do, but you know what? One girl decided to share her story, too. Or reach out for help. Or start asking questions. And that lead to more women doing it… until just a little part of the PCOS community didn’t feel like they wanted to just disappear. So yes, I may not be an educator. A researcher. A scholar. I won’t ever be rewarded for my perfection or praised for my shiny life. But I will keep making sure one more women knows she isn’t alone. She deserves better. She is worthy. She is not alone. You are not alone. You deserve better treatment, advocacy, understanding, and knowledge. But you have to speak up. You have to give to the people speaking up for you. Support those people. Every little bit helps. If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 o r text “HOME” to 741-741 . Head here for a list of crisis centers around the world. Follow this journey on PCOS Support Girl. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: sisterspro

Editor’s note: This piece was published with Heather’s permission. My favorite part of this community is getting to know you all. Once a week, I sit down and make an effort to email back or message anyone who reaches out. Usually it’s a good mixture between support, asking for advice and hate mail. But every once in a while, it’s something bigger — even if I don’t know it yet. This January, I got an email from a young girl, a senior in high school, who was struggling. She was being bullied, struggling with depression and just having a hard time. Her last line of her email said, “I am scared a boy will never like me enough to take me to prom.” It broke my heart — because guess what girl didn’t get asked to prom? Right here. I reached out and we quick became friends. We spent two months emailing every day. Then one day, I asked her, “Can I send you something?” fearing that I was sounded like a creep. “SURE!” She responded. So I sent her a letter — just some ramblings on loose leaf, just to let her know I cared. It said: Heather, You are worth more than those words they say about you. Words cannot define you. I know those locker-filled halls feel suffocating right now, but I promise there is so much more to life. It’s more than what size you wear, whether you fit in with the “cool” kids or not or how much people like you. Always remember, the only person who has to like you — IS YOU. But I bet you’ll find beyond those walls, the people who like you. No — love you. Why wouldn’t they? Do you know how amazing you are? Can you promise me a few things? Please. 1. Do one thing a day that scares you. I mean it. Really scares the shit out of you. 2. When the voices of those around you get too loud, trying to tell you who you are and who you should be, it’s OK to get louder. Use your voice to say, “No. This is who I am.” Some people won’t like it — but they’ll respect you for it. More importantly, you will respect yourself. 3. Go to prom! I mean this one! Even if no one asks you, go. Get dressed up. Dance. Laugh. Have fun. For you. Life is quickly going to start making you feel like you need someone to be complete. But you don’t. Life is just like prom. You can sit at home, wishing you had someone take you where you want to go. You can settle, and chose the easy way out and do what people tell you you should do or you can decide this prom (or your life) is exactly what you make of it. So you better have fun. Shake your ass. Do things that make you feel happy. Sure, people might judge you, but they always will. You have to just go to the damn prom anyway. 4. When you are sad, talk to someone. 5. When you are overwhelmed, ask for help. 6. When you are happy, give some away. And no matter what, be brave. You won’t always be ready. You won’t always have the answers. You most certainly will not be able to control it. But you can always be brave. You won’t always feel strong, and that’s OK. But you are stronger than you will ever know, and if you ever forget, call me.” And life went on. And suddenly, my own life got messy. Scary. I felt out of control. I, most certainly haven’t felt brave. Tonight, as I realized I was three weeks behind on checking my mail, I knew exactly why. I was avoiding it. I felt like I had no place to offer advice. I had no answers. My thought was, No one gives a shit, Shelby. You are one person. What you say doesn’t matter. But, as life always does, I just did it. I went to my mailbox, and there it was. A hand-addressed letter to me. I opened it up, and I saw a crumbled up, dirty piece of paper with a note attached. It looked familiar. It was my letter I wrote to Heather, months before. I thought, Why the hell is she sending it back to me? Attached to it was a photo copy of my original letter. It had edits on it, and a handwritten note on the back. Shelby, I hope you’re not upset that I sent your letter back. It’s not that I don’t want it. I have carried it around with me every day as a reminder of all the promises I made you. It served as a constant reminder to be brave. But I have noticed lately in your posts that you seem sad. Maybe a little lost. That’s OK, you told me that. I thought maybe, I would let you hang onto it for a while. Just so you remember what you told me. I am here if you need someone to talk to. I know it can’t be easy being vulnerable when people think you are strong. But are you doing one thing a day that scares you?  Are you being brave? If not, this is your reminder. I am sorry it’s not much. But, this note saved my life more than a few days. So I am here. So hang on to it. I may need it back, when life isn’t so easy. Oh! And I want you to know I went to prom. I went and I danced my ass off. By myself. And had the best time of my life. Heather I don’t know where I am going with this, other than little things matter. You don’t know what impact you are having on another’s life. Everything comes full circle. Always. So do the little things. Return emails. Call up and check on your strong friend. And do big things, too. Go to prom, take that job offer and do things people told you you couldn’t and prove them wrong. Someone does “give a shit” what you have to say. It’s always important. The same people you think you’re helping, may end up helping you. We all need a little reminder some days. If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741 . We want to hear your story. Become a Mighty contributor here . Photo via contributor.