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Dear Loved Ones: This Is How It Feels to Live With PCOS

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I often feel the need to speak up and share my feelings regarding my diagnosis of polycystic ovary syndrome (PCOS) because there is not a loud enough voice for all of us who have it. I want you to understand the struggle it can be to be a woman with PCOS. I know listening or reading about a disorder that involves “lady parts” can sometimes be a deterrent for some and they shut off right away. My own reaction to this diagnosis changes from time to time depending on how bad my symptoms become, how my own doctors react to my needs or my ability to control what is going on with my body. I can understand if you don’t get it either. I can see how at times it may seem like I’m whining. I can tell you for sure that I’m not. I’m just frustrated beyond belief. It is not always easy to cope. I need your support at times. I want you to understand how this can affect everything about my being.

You may characterize me this way: moody, depressed, obsessive, envious, bitchy, a picky-eater, tense, vain, know-it-all, anxious and overemotional. None of these character traits sound attractive. I can see why it may be a turn-off to be around me if you don’t understand. I prefer to describe myself this way: health-conscious, confused, self-conscious, impatient and fearful, isolated and alone, sad and hopeless, unsettled and judged, frustrated and angry and so very tired.

Living with PCOS makes me feel health-conscious. I always felt I was healthy. I used the food pyramid as my guide. I exercised. I never thought that would backfire on me. I can’t eat food like my friends and family choose to do. If I indulge in pasta for the big race or a slice of pizza when I’m out to lunch with my friends, my body tricks itself into thinking it needs more of this type of food to function. It doesn’t burn properly. It makes me feel tired. It can also make me feel sick to my stomach within the hour. I need to eat a certain way to keep my hormones in check and to help my body to function properly. I’m told to exercise a certain way. Too little and I can’t burn fat, too much and my testosterone levels rise. I never thought it would be this hard to keep my health in check…

Living with PCOS makes me feel confused. There is so little definitive information out there about how to navigate my way. Very few doctors have a solid plan to help. Information can be conflicting. What may help one symptom may make another flare up. My symptoms may differ extremely from another woman with PCOS. There are a lot of different symptoms that can be attributed to PCOS. There is not one medication or supplement you can take to fix them all. Can I hinder progress while trying to solve another issue? I want to help myself but I’m not sure where to turn for the best knowledge.

Living with PCOS makes me self-conscious. Let’s just say it… hirsutism is horrible. Hair is here, there and everywhere. Hair removal is an Olympic event. What is the best method to remove it? How soon will it come back? How expensive is the upkeep? Do I look like a man today? Is my beard showing? I feel stubble and its only 9 a.m. A trip to the beach requires at least an hour of prep time. Shaving happens every day – sometimes
more than once a day. Then we have acne. Not just a random pimple but the cystic OMG-it-hurts-so-bad under the skin acne. It shows up randomly on my face, under my hair, all over my back and sometimes even on my breasts. I try to hide the hair and acne under clothes or make-up. I thought a woman was supposed to look more graceful with age. I never knew I would long almost daily to feel pretty or just want to feel like a woman.

Living with PCOS makes me impatient and fearful. I just want answers.  I was told weight gain happens quickly with PCOS. I was also told weight loss can be difficult. I was told to take the weight off to improve my infertility. Now it’s “take it off because your blood pressure is too high.” Too much weight as I age can increase my risks for non-alcohol related fatty liver disease, heart disease, cancer and diabetes.  It’s been two years of hell – doing all I’m told to do to try to take off the weight. The scale isn’t moving. My doctors are mystified but don’t know how to help. My risk is higher for anxiety and depression, too. I’m terrified of what health problems are going to arise in the future.

Living with PCOS makes me feel isolated and alone. I’m surrounded by athletes. I am an athlete. I’ve always been an athlete. I’m health-conscious. I eat clean. I exercise. I run races. I lift weights. My outer shell isn’t a reflection of my inner being. I don’t feel good about myself. The extra weight I carry physically holds me back from what I want to achieve. I feel the burden. When I talk to people about my concerns I’m met with advice, not a listening ear. “Just don’t eat so much.” “Watch your portions.” “Have you tried LCHF? Keto?” “Do you follow Macros?” “Eat more protein.” “Cut out dairy.” “Go gluten-free.” “Have you tried Whole 30 yet?”

I’ve known I’ve had PCOS for over 20 years. I’m well-read and open-minded about how to help myself. I feel angry when other people think I’m uninformed about my own diagnosis and the process for dealing
with it.

Living with PCOS makes me feel sad and hopeless. There is little funding for PCOS research. Not much has been done to understand it. Recognition of this medical disorder in women has been around since at least the 1930s, yet it is not known whether the disorder is due to an endocrine problem or a metabolic problem. Most doctors only treat it as an infertility issue and nothing else. It’s difficult living day to day knowing the medical field is so unsure. As a patient it’s hard to live with the idea there may not be an end in sight for a cure during my lifetime. I’m left on my own to fight my own battles for now.

Living with PCOS makes me feel frustrated and angry. Why can’t my body function like it’s supposed to? Why did I fear I was pregnant when I missed a cycle? Why did I have to struggle to get pregnant? Why are my cycles so inconsistent? Why could I lose weight before and get my hormones leveled out but now I can’t? Why am I so tired… like dragging my ass through the mud tired? Why can’t I sleep? Why am I drenched in sweat like I swam through a swimming pool? Why? Why? Why? Why can’t I fix any of it?

Living with PCOS makes me feel tired. I’m tired of thinking through every aspect of my life. I don’t want to think about what I have to eat all the time. I don’t want to force myself to exercise just to get by. I want to actually enjoy it. I don’t want to have to explain to every new doctor that I have PCOS and what it does to my body. That’s their job. I don’t want to be subjected to blood test after blood test to monitor my hormone levels, insulin levels, thyroid, etc. My veins are scarred from years of it. I’m tired because my hormone surges at night cause me to wake up hot and sweaty. My anxiety keeps me awake with my mind racing. I’m tired. So tired of it all.

At times I feel like I have it all together. I’ve done the research. I’ve found what works best specifically for my own body. I’m learning different methods to cope with many aspects of this diagnosis. I’m confident I’ll survive whatever I put in my path and push through. I’ve learned I need to be my own best advocate. If I don’t feel comfortable or confident in my medical care, no matter how long I’ve been with any particular doctor, it’s time to move on and find someone better. I’ve learned how to listen to my body. I’m very attuned to what it says to me. I’m aware and am learning how to be assertive about my needs concerning my loved ones, friends and medical care. I cannot do this all on my own. I’m trying really hard to focus more on life than on my diagnosis.

You can help me in more ways than you know. I need you. I can’t always do this alone. Regardless of what I verbalize, PCOS does affect me daily. It causes me stress, anxiety and sadness which may affect our relationship. My emotions will clearly affect your emotions and reactions toward me. Please know there are days where a listening ear, a hug or an “I understand” can mean more than a word of advice.

I need you to be an active listener. Talking or writing about my difficulties with PCOS is healing for me. If I choose to share what is going on out loud it probably means I’m struggling hard. It is sometimes difficult for me to verbalize the intense feelings that are occurring without feeling whiny. Please let me know you are available to listen… but make sure you are fully available. If you are rushing to get to an appointment, dealing with a small child, talking to me while you’re shopping or pushing me off quickly because you have a meeting, it can be very difficult for me to become vulnerable and talk it through. I’ll feel pushed aside and will probably not come to you again for help. Some of the worst things I can hear are “it’s not as bad as you think,” “it will happen in due time” or the standard “it’s not worth the worry.” These statements will all negate my feelings and make them feel invalid.

I need you to be supportive. Understand that my body is not your body. Understand that even though I may look OK on the outside, I may physically be in pain. I’ve learned over the years how to hide what
physically ails me because it gains no sympathy… or I’ve become numb to it.

I need you to be sensitive. You may want to lighten the mood because it’s too hard to talk about… or maybe because you’re just too tired of listening. I may even laugh when you crack a joke about what PCOS does to my body but it’s not a joke to me. Sometimes I feel it isn’t worth the
fight to cause conflict over your words. It’s not that I don’t have a sense of humor. I’m just very sensitive to this particular topic.

I need you to be informed and educated. Advice is always welcome but it won’t be when it’s not based on your knowledge of PCOS. When you make it clear that you aren’t aware of what PCOS is or the intricacies of it, then don’t try to give advice on what I can do to fix it. The snippet of information you saw on five minutes of the morning show may be a starting point for a conversation, but it’s not a sure fix for everyone.  Please don’t be offended when I tell you that a particular thing won’t work for me. I’ve been doing this for way too long. I will always welcome your advice and suggestions. Just be aware that if they are not based on fact, I will become extremely frustrated. Ensure you are well-informed so when others bring up advice for me, you can give educated feedback.

What I really ask of you… be a part of my happiness. Be my strength when I can’t be my own. Celebrate my successes – the big ones and little ones. Encourage me – tell me if you are proud, I may need the reminder. Boost my self-esteem; there is not one day when I don’t need it. Laugh with me.  Cry with me. Just love me.

This post originally appeared on Finding My Happy.

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Originally published: January 4, 2018
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