My PMDD Story

I know my experience is quite more complicated than others. Before that, I had been growing up as an autistic child since I was 2 years old(which it’s why mine was super complex between my menstruation and autism). I reached puberty at age 11. And, this is when I began to have my first period. I was a bit scared. My parents said that I’m growing up. During puberty at my preteen age, it began with traumatic moments. Those moments were Divorce, bullying, school pressure, on/off relationships with food/weight, body image issues, grades, isolation, and disconnection. Sadly, at my preteen age and puberty, this was also when I have had many suicidal thoughts(without being suicidal). During high school, my mood swings went bad and the relationships with my family had gone bitter, but worse during the holidays. This is when I have both anxiety and depression. During my preteens and high school life, I ended up using food as my “ coping mechanism”. Is it binge eating or emotional eating? I have also been struggling to deal with autistic traits since my childhood and my puberty. From my cycle, the hormones have gotten worse between before, during, and after my period. During my 20’s, I hid my mental health issues after the first physiologist when I moved in different state. The worst things was that she told me that it was been my fault the whole time and I was responsible for this mess. I'm incredibly hurt. I have to put on my “mask” permanently so I can be more fitting in at my new school. I remember during my second college, I had emotional meltdowns that I wasn't doing anything right as I felt like a failure. I have serious perfectionist issues, especially from my high school art class. I also kept denied when others said that I should get professionals. While my niece was born, it became roller coaster. Later, I have to seek help. One of the treatments didn’t go so well-it’s the PSR(psychosocial rehab). It did help me with some social a bit. But, the staff have been treated most of the clients/patients as preschoolers. Then, when my nephew was born, my symptoms, both emotionally and mentally have gone worse than I thought. I felt pain and confused. Was it my autism or my menstrual style? My sensory overload issues?

I know it sounds strange. I always get those words, ‘its just anxiety,’ ‘it’s depression,’ it’s just PMS,’ ‘it’s part of being a woman’,etc. I had never known about PMDD until later in 2018 or around 2019. I couldn't remember. I thought I should watch some videos on YouTube about how no one believes in mental health(‘People Didn't Believe My Mental Illness’ by As/Is on YouTube channel) , including one of the women who has PMDD. When she said that no matter she’s doing ok, she said she seemed like monster. I kept thinking about I wonder if I’m like her or that sounds like me. Then, I researched some clips about “PMDD” when women had gone experienced before they have this disorder. I was about to cry. I confessed to myself that maybe I'm one of them. When I was watching a clip ‘What is PMDD?’ by Me V PMDD, my heart sinks deeply. I wanted to cry.

I have been checked those symptoms both physically and mentally before my period started as I should be. About my physical issues, every month, I always get so randomly in different parts. Due to my bad anxiety before/during my period, I always get so many uncontrolled intrusive thoughts like it wouldn’t go away. I have always been easily dismissed, misunderstood, shamed, judged, and ghosted by others, especially the ones whose been close to me. I always get those labels ‘time of the month’, ‘dramatic’, ‘sissy’, ‘‘manipulative ‘ ‘crazy’, ‘weak’, ‘negative’, ‘people pleaser.’ It happened every single month, from 4 to 2 weeks before my menstruation. No matter how good or bad, I have always been messed up, especially these relative/restrictive behaviors. I made bad mistakes, poor decisions, and consequences. Then, I ended up blaming and shaming my autism for everything(it was the most heartbreaking thing I have ever said). I thought that I should've disappeared a long time ago or I shouldn't exist at all. I have been constantly ashamed and insecure no matter what my emotions, actions, feelings, etc are shown myself, my family, friends, in public. I thought that I deserve to be more silenced. I thought I was gonna give up for real. However, I should never give up. I have to find as much help and hope as I can. I have to seek help more than I have it before. I think somethings wrong. It doesn’t sound like anxiety and depression to me.

Most of my symptoms from PMDD(some depends how intense it it deeply while my hormones were fluctuated), that I realized-

• panic attakcs
• anxiety
• excessive worrying
• intense mood swings
• feelings guilt/sadness/deep depression
• feeling out of control
• appitete changes -whether I’m hungry or don’t feel hungry at all(lack of appetite)
• fatigue
• body aches/joint pains/muscle sore
• bad cramps
• feeling bloated
• extremly sensitive of rejection
• difficult on/off relationships including close ones and families/trouble to getting along with them
• perfectionist issues
• suicidal thoughts/thoughts of death
• feeling drained
• on/off interests/hobbies

I have been always aware of that. I have to get more help than I need. I know it's very important to know about my body. I'm glad that I made the right choice. I have to talk to my doctors and my therapist right away. Around later 2019, I was talking to one of my doctors/therapists about my intense symptoms before my period. I would never forget with his shocking expression. I realized he had a client who had similar issues before. After that, I have to call my primary doctor. But, I have to find a gynecologiat in order to approve my insurance. I did asked my sister about finding one. She recommended the one while she was pregnant with my niece or nephew. After I contact the woman health center, I have to wait. Finally, it got approved. I’m all set for the appointment. Unfortunately, it gone slowly due to the covid crisis and safety concerns. Yes, it was frustrating and unbearable. But, I have to be patient. I also looked over my old calendars and old journals about the memories I have before the week from my period. I have been waiting and waiting. Finally, it’s the early week of August 2020. I have been very patient. That is when I was heading for the first time to meet my first OBGYN/Gynecologist at the women’s health center. I felt appreciated and grateful that she understands why autistic women have more but worse hormonal fluctuations and very complex to understand by others than non-autistic women. She used to be a psychologist for young women with disabilities including autism. And this is when I was finally and officially diagnosed with PMDD.

I know there is no cure at all. How did I survive? I have to keep practicing! Practice, practice, and practice as much as I can without quitting. I always take and use as many self-care and positive coping tools as I can. It doesn't have to be ‘perfect goal’ especially while I was doing meditation, hypnotherapy, and breathing exercises. I have to take one step at a time. Always take baby steps. I have to take more exercises and be more active, including walking and yoga. I have to keep managing my emotions. I still have to be aware of and keep reminding myself of any situation whether it's a fun time or a bad time. I have to rest or take a nap when I feel emotionally exhausted/burnt out. I have to keep re-strength myself. After I was recently diagnosed, I have to be more empower myself and keep empowering women with PMDD, reproductive mood disorders, mental health experience, etc.

I have learned that I'm already on the right path(a true strength) because PMDD has taught me that I have to keep educating myself as much as I can. I should never punish myself for actions and moods during my cycle. What else it has taught me is that I have to talk to the right people who are more patient, understandable, and supportive. I want others, including my family, to understand more where we are coming from and what our struggles are without being stigmatized and dismissed. The biggest challenge is that my family still didn't understand or believe how PMDD is much more than just a “severe PMS.” At least I did my best and I should never take it too personally. I am proud that I have support groups with all women who have the same battles as I have. I am grateful that I have people who truly understand my PMDD. I am proud that I was volunteering and supporting the PMDD awareness. I am very grateful and glad that I am not alone at all.

I’m so lucky that I have the best doctors, two wonderful therapists, a few amazing mentors/coaches, and some of my friends in my life who understand PMDD so far. I am grateful to all women from PMDD support groups including the video support group meetings. I also want to thank to all amazing foundations and communities who helped and supported to all women with PMDD/PME: Me V PMDD, IAPMD(International Association for Premenstural Disorders) , and Vicious Cycle: Making PMDD Visible.

If you’re worried and concerned that if you or someone you know has PMDD-please reach out to your doctors as you can. There is help and there is hope. You are not alone.

You can also see my pieces on Instagram - https://www.Instagram.com/meghansdreamdesigns

I also did another writing about unmasking my PMDD and Autism to IAPMD’s blog

Resources/References