When your body is failing you

Being depressed & PCOS

Depression is often not taken seriously. You have to surround yourself with people who understand, who will not constantly tell you to “snap out of it”. When things beyond our control are to blame for depression, there is no “snapping out”, really. While it might seem as an excuse to feel sad and pitiful, it is not. Those who are depressed would like to feel good again more than anything else.

We were drinking coffee and discussing depression and how it leads to suicide when my friend, a psychology student, said the following: “The majority of those who say they are depressed have no idea what depression really is and feels like”. I nodded and at the same time I thought and asked myself whether I really had no idea, how being depressed felt like.

I am writing this in hopes to explain why it is so important to be there for those who are in need of your acceptance, empathy, and support. As many women out there I struggle with PCOS (polycystic ovary syndrome). PCOS is one of the most common endocrine system disorders among women and the leading cause for female infertility. I have been struggling for eight years now and I will struggle until the day my “biological clock” stops ticking.

PCOS has many signs and symptoms. When your body starts showing them, people around you are likely to think, that your symptoms can be explained by an unhealthy lifestyle and are caused directly by something you did wrong. Acne, weight gain, hair loss, hair growth (in unexpected places), mood swings, depression, anxiety, insomnia, narcolepsy, asthenia, and many others can be symptoms of PCOS or other similar conditions. When I was diagnosed at the age of 17, I felt like my whole world had just been nuked. My menstrual periods rarely happened, but when they did, they were extremely painful. In a year, I gained weight and I started feeling worse. Not only did I look not quite like myself, but I was hurting on the inside too. I stopped going out, stopped seeing friends, because I was ashamed of the person I saw in the mirror, and soon my self-esteem went down the drain. Worst of all, the thought of becoming infertile was and still is scary and paralyzing. The doctors say I might have a hard time getting pregnant, and I may need medication to help me ovulate, but I still should be able to. Some are not as fortunate. Every time I read about a family finally being able to conceive and carry a child after years of trials and miscarriages, I burst into tears. The happy ones.

We get little support from the healthcare system, and what pains me most, we often get even less from the people we are surrounded by. Although PCOS has been recognized for more than 80 years, diagnosing it is still puzzling for medical practitioners today. There is little known about PCOS despite how widespread it is. Either society pretends there is no such problem or does not know about it at all. It is extremely difficult to explain what we are going through to someone who is not affected by PCOS or at least has not spent hours reading on it. People usually shame or pity us, but they never fully understand. My family is supportive in its own way, but hearing “you have to stay positive” and “you do not have anything to be depressed about” in every conversation hardly helps. For a time I felt so bad, that I thought I was going crazy and I should see a psychiatrist. Answering the simple question “how are you?” was challenging because I had no desire to spread my depressive mood, and at the same time, I did not wish to lie about how things really are. This again resulted in many lost connections. People would think I was not interested in them, while in reality I cared so much that I did not want to upset them and make them feel uncomfortable. Ultimately, becoming antisocial had worsened my condition. Talking and socializing is important, but it has to be with caring and understanding people, those who are willing to listen. For me empathy was hard to come by.

Understanding PCOS

When I moved to Canada, I not only embarked on the journey of a lifetime, but also got the chance to find more about PCOS. The doctors here know what they are doing – most of the time – and you can expect to get help when you really need it. I got a better hormonal therapy, received sane dietary advice, and even found a support group. While researching one of my symptoms, I stumbled upon an online forum with more than 90000 subscribers, both people with PCOS and their supporters, each one telling their story, asking for advice, or sharing the happy news. I cried that evening. The shroud of loneliness had finally lifted. I could now breathe freely knowing that I am not going crazy and there is nothing wrong with me aside from the unfortunate PCOS. Those 90000 knew what I was going through, because they struggled with the exact same issues. Most of us have a hard time speaking to our families about PCOS. Either we do not want them to worry, or we do not get the support and understanding we seek. I had a sudden relief knowing I was not alone in this. Reading them, talking to them, and asking for their advice was different from sharing my troubles with family and friends. These women did not turn their eyes away from me, neither did they say “cheer up” expecting me to put a smile on my face.

The average woman suffering from PCOS looks like this:

  • Her first menstrual periods are extremely painful.
  • Over the time, her periods become irregular and even more painful or stop at all (amenorrhea).
  • She starts gaining weight despite her healthy lifestyle (caused by insulin resistance).
  • She becomes tired fast and feels sleepy most of the time, especially after meals.
  • Her mood swings drive her crazy and have an impact on her interactions with family and friends.
  • At the age of 17-19, she is diagnosed with PCOS.
  • Over the next five to ten years, she suffers from most of the symptoms described earlier.
  • If she does not study her condition and attempt to adjust her lifestyle, it gets worse.

OR

  • She is diagnosed years later after failing painfully at conceiving and carrying children.

Of course, not every woman with PCOS has the same symptoms and all of them at once – everyone is affected differently, which makes this disorder difficult to diagnose. Early diagnoses can reduce risks for developing other conditions, including insulin resistance, type 2 diabetes, and heart disease. It takes a combination of physical and pelvic exams, several blood tests, and ultrasound to rule out disorders with similar symptoms.

Women suffering from PCOS have to control their weight, stick to a low-carbohydrate meal-plan, and be active. This lifestyle can become very enjoyable, but it is not easy to manage, especially when you are experiencing mood swings and depression. Without support, fighting PCOS can constantly feel like that battle you are about to lose.

Showing your support

Living with someone who is coping with PCOS might present many challenges. The best thing you can do to support your partner, relative, or friend is to participate in their activities, exercise and cook together, find a hobby that both would enjoy. You have to figure out your own perfect combination for bonding, stress control, and therapy. The wellbeing of a person suffering from PCOS depends greatly on the quality of their lifestyle. Personally, I believe that being genuinely happy is the best therapy out there.

The mood swings can be particularly exhausting, both for the women with PCOS and those surrounding them. Learning to forgive each other and being patient might save your relationship. Above else it is important to remember that the person with PCOS does not have control over most of her symptoms. She wants to be healthy and happy, and to feel “normal” even though sometimes she can hardly remember what “normal” feels like.

If someone in your life has PCOS, I suggest reading about it first, then looking at stories shared by other women. You will be surprised to find out how they feel, and that this might be the exact way the person you care about is feeling right now. Understanding our fears, accepting our flaws and knowing that some of them we did not choose, learning to see and hear our struggle and not ignoring it – that helps. Being kind helps. What you say can have a huge impact, so try not to sound insensitive and judgmental. And being there helps most of all. We do not always ask for it, because we do not want to be a burden, but the truth is we need you.

Raising awareness

There is one thing left. According to an estimate of The World Health Organization, PCOS affects 116 million women worldwide. As high as that number is, it is probably even higher, because the vast majority of women with PCOS never received a proper early diagnosis.

The society has little to no knowledge of PCOS. Spreading awareness should improve diagnosis and help prevent future health complications. While any female of reproductive age can be affected, medical practitioners are not always equipped to recognize PCOS. Women need to know the signs and symptoms of PCOS, and learn how to proceed if they are experiencing any of them. Raising the overall level of acceptance, patience, and kindness would improve upon the lives of not only the women affected by PCOS, but everyone experiencing something that makes them different in any way.

I hope for a better future for us all, but we are not going to get there, if we do not start a conversation about it today. The society itself has to be the driving force of change. We, women with PCOS, have to find the strength to talk about it not only with each other, but also with everyone else. I want the girls hitting puberty tomorrow to have better options, control over their bodies, and the knowledge to take care of themselves. I want every woman embracing motherhood never to experience the pain of not knowing whether she can conceive or not being able to. I want every family to know the joy of having a child.