Award winning advocate Danyelle Fay tells us about the 5 symptoms of her disease that healthcare professionals can't seem to put together.
How much can I truly handle?
I ask myself this question every day for two weeks out of every month. It has become almost like a personal challenge, a game, to see how many ups and downs I can survive. Each day is a new level and if I can make it to day-14 I’ve won the whole game! Until next month of course when I’m right back at the beginning. It is the definition of frustrating.
To make matters worse, there are very few resources I can seek out for help with my symptoms locally. Doctors dismiss emotional symptoms in women and hysterics or being overly sensitive. They’re more likely to give us sedatives than treat our medical conditions.
I’m going to do my best to explain to you the worst 5 symptoms I experience for 14 days out of each month of my life. Then I’ll tell you why I experience them.
“For every man that dies by suicide, four women will attempt it” – IAPMD
(I don’t need 5 symptoms when this is number 1.) When I become this low my brain does not think rationally. I feel like I am someone else – like there is no future and I am approaching my end. No desire to make new memories because everything feels cold and harsh. Turning to friends isn’t an option because they do not understand how hard I am already trying. If I wasn’t trying, I’d already be dead. The version of suicidal thoughts I experience includes me aching to hurt myself in some form, it becomes an obsessive thought that is constantly nagging at me. The thoughts are loud and do not slow down easily.
“Women are twice as likely as men to suffer from depression” – IAPMD
There’s a heaviness in my lower chest. My hands feel uneasy, my arms feel like they are disconnected from the rest of me. I know logically there are other people out there who feel these things too but overall, emotionally, I feel like I am standing alone. All of these people in the world and I am utterly alone. It weighs me down to a place that the smallest task is draining. Speaking can feel like a strain and moving feels nearly impossible. The sun doesn’t reach me here. I have trouble leaving bed. It mimics the same feelings I had when I lost a loved one.
“I get angry and upset at the smallest stuff” – Rae Jacobson
The anger I face is like a switch and it doesn’t take much to turn it. It becomes a consuming rage. It doesn’t matter who’s talking or what they’re saying, I can not handle it. Their voice becomes an unpleasant sound. I feel like I am boiling from the inside out. The anger comes with dozens of impulsive thoughts. I can feel this anger like tension – have to isolate during the anger episodes because it truly isn’t anyone’s fault. There is so much shame with this symptom because I pride myself on being loving and kind..but this is simply out of my control. I have to remember this isn’t me. This is a symptom.
“And if I take in any kind of love, I feel that I would just cry so…” – Ange on The Mighty
I cry to the point of my eyes swelling and my face breaking out. The crying can last hours. Painful, deep sobbing. My record is 6 hours straight of crying and the only reason it ended there is I ran out of energy. The worst is when it hits me in public. I can’t even count how many public restrooms I have quietly sobbed in. Even at home, things will feel alright and then it builds up in my chest and I can not hold it back, its challenging because once it starts it is difficult to stop so as you can imagine going to class or doing anything in public feels like a risk.
“It’s a disorder that causes severe irritability, binge eating, sadness, anxiety, bloating and fatigue, but it’s not PMS – it’s worse.” – Healthymummy
You know how when you’re sad you’ll reach for ice cream? Take into consideration everything I just shared with you. Food becomes my best friend and worst enemy. It’s difficult for me to resist cravings and food urges because everything else hurts so much. Food brings a small relief that I am so desperate for. During the two weeks of symptoms, I lack control. I end up gaining about 6 pounds. The two weeks that I feel like myself are usually spent making healthy meals and working out, I do end up losing those 6 pounds but very shortly after I am back to my symptom weeks..meaning I gain them back. It is a cycle and it is annoying to never really see any progress.
So, now that you know my top 5 symptoms, how extreme they are and that they clearly impact my daily living you’d think the doctors would be on top of this right? Unfortunately not. I have shared everything I just told you to numerous professionals. I sat down with primary care and gynecologists’ to read them pages from my journal so they’d understand that this is real and severe. Due to the lack of knowledge and experience with these symptoms it took a long time to diagnose me.
I have been diagnosed with Premenstrual Dysphoric Disorder or PMDD. In short, PMDD is a hormone-based mood disorder that starts at the luteal phase of your menstrual cycle and lasts until the onset of menstrual flow which is why symptoms last two weeks, commonly referred to as “Hell weeks” by the PMDD community.
Imagine going through all of this for 14 days straight and not being able to seek help. I have had to learn how to handle these things on my own. I have had to become my own advocate. After lots of trial and error, I am finally on an antidepressant that takes the edge off, but unfortunately I have not found a personal cure-all. This misery is my reality. It is the reality for many and comes with little support from professionals.
1 in 20 menstruating people experience this yet the knowledge and support for PMDD is scarce. This is why I take every opportunity I can to educate people on PMDD. It is a matter of survival. and people deserve to know this disorder exists.
Danyelle’s other article, “Premenstrual Dysphoric Disorder: It’s not Just PMS“
Or our eye opening article by Callum Radley, “Young Adults with Chronic Illness: The Forgotten Ones“
Danyelle Fay is currently a college sophomore. She has done advocacy work for Premenstrual Dysphoric Disorder (PMDD) on both her college campus and across social media platforms. In 2019 she received an award from the International Association for Premenstrual Disorders (IAPMD) for being heavily active during PMDD awareness month. Danyelle lives in New Hampshire with her cat, Pepsi. Her goal is to someday pursue a career in writing.