Unmasked: Living with PMDD & Autism

CW: suicidal thoughts

Hello to everyone in the IAPMD community. My name is Meghan, and I’m from Mississippi, USA. I would like to share with you my journey and experiences with my new diagnosis, PMDD (premenstrual dysphoric disorder). Since I'm still new to this diagnosis, I will do my best to share what I have experienced.

For starters, I had been growing up as an autistic child since I was two years old. I reached puberty at age 11 when I had my first period. During puberty at my preteen age, many chaotic and traumatic moments took place in my life - my parent’s divorce, bullying, being pressured in school, on/off relationships with food/weight, body image issues, struggling with grades at school, including from my learning problems, and disconnecting from my family and peers. Unfortunately, this is also when I began to have many suicidal thoughts and thoughts about death.

During high school, my mood swings worsened, and my relationships with my family turned bitter, even worse during the holidays. At this time, I was diagnosed with both anxiety and depression. During my preteens and high school life, I ended up using food as my “coping mechanism” to deal with bad times - binge eating and emotional eating. As an autistic woman, I also struggled to deal with many traits since my childhood and puberty. Due to my cycle, the hormones made things even more difficult before, during, and after my period.

During my 20s, I hid my mental health issues even more. The first doctor I saw at my college told me that all my struggles were my fault and I was responsible for this mess. I was incredibly hurt. I felt like I had to put my “mask” on permanently just to fit in at my new school. At my second college, I had many emotional meltdowns because I felt like I wasn't doing anything right. I felt like a failure.

Through all this time, I had serious issues with perfectionism, and I’d also get extremely distressed and confused because of my autism and my menstrual cycle. This included difficulty understanding others/emotions, issues with focus/memorizing/concentrating on the important things, getting easily distracted/upset/overwhelmed, feeling burnt out, mood swings, extreme sensitivity to rejection, and sensory overload issues. I tried not to be ashamed, but it was still very challenging. I also had physical issues every month, mostly bad cramps, body aches, and feeling bloated.

Symptoms of PMDD include mental emotional and physical symptoms — PMDD can cause emotional, mental, and physical symptoms in the 1-2 weeks before a woman/AFAB individual’s period. Image credit: Meghan LeVaughn

During my late 20's and early 30’s, I became an aunt. While my niece was a baby, it was an extremely emotional roller coaster. Then, when my nephew was little, my symptoms, both emotional and mental, got way worse than I thought possible. Of course, my sensitivity to rejection and trust issues also got worse, especially before my period. When things were stressful or I was over-stimulated, I’d get easily overwhelmed and feel “out of control”. I’d get so irritable when the smallest things annoyed me. Rage was the worst thing. I always felt uncomfortable and afraid that if I showed my rage in public everyone would think I was a monster. Due to my bad anxiety before and during my period, I would always get so many uncontrolled intrusive thoughts that wouldn’t stop. I haven't loved, appreciated, or accepted myself at all since I was little.

During my lifetime, I’ve always been easily dismissed, misunderstood, shamed, judged, and ghosted. When I made any bad mistakes or poor decisions, I ended up blaming and shaming my autism for everything. That might be the most heartbreaking thing I have ever said. I thought that I should've died a long time ago, either in high school, during Election 2016, or Pandemic 2020. I'm constantly ashamed and insecure.

I’d also have these Jekyll/Hyde moments which is the scariest thing in my life. Strangely, I had never known about PMDD until later in 2018 or around 2019; I can't remember. I was watching some videos on YouTube about how no one believes mental health issues are real and found one video about women who have PMDD. Then, I researched some clips about “PMDD” - what women had experienced before they found out they have this disorder. I was about to cry. I confessed to myself that maybe I had PMDD too. I had all the PMDD symptoms both physically and mentally before my period started. I realized then that I should never give up. I have to find as much hope as I can. Hope is very important to me. It's a symbol to seek help.

When I realized that I might have PMDD, I knew I had to get more help. I had to talk to my doctors and my therapist right away. Around late 2019, I was talking to one of my doctors/therapists about my intense symptoms before my period and I will never forget his expression of shock and surprise when he realized he had a client who had similar issues before their period too.

Unfortunately, getting help for my symptoms has been slow due to the Covid crisis. But I have been very patient. Finally, in the first week of August 2020, I got in to meet my first OBGYN/Gynecologist at the women’s health center. I felt appreciated and grateful that she understood why autistic women can struggle more with hormonal fluctuations 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 felt relieved. Thank goodness.

I’m so grateful and 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.

How have I survived my worst times with PMDD? It takes practice! I try to use as many self-care and positive coping tools as I can. It doesn't have to be perfect 100%, especially with meditation and breathing exercises. I have to take it one step at a time. Always take baby steps. I have to exercise more and be more active, including working out and doing yoga. It helps me feel better about myself. I have to rest or take a nap when I feel emotionally exhausted/burnt out. I have to keep managing my emotions and reminding myself that I am strong in any situation, whether it's a fun time or a very difficult/stressful moment.

Teal graphic that says PMDD is overwhelming chaotic scary uncontrollable exhausted and life changing — Image credit: Meghan LeVaughn

Why do people keep judging or criticizing women like us for our intense symptoms? It is so unfair. I feel hurt when people don't take it seriously. Since my diagnosis, I made an effort to empower myself and empower other women with PMDD, reproductive mood disorders, mental health issues, etc.

PMDD has taught me a lot. It’s taught me that I have to keep educating myself as much as I can and that I should never punish myself for actions and moods during my cycle. It’s also taught me that it helps to talk to people who are more patient, understanding, and supportive.

The biggest challenge right now is that my family still doesn't understand how PMDD is more than just “severe PMS.” I do my best not to take it too personally. I want others, including my family, to understand more where we are coming from and what our struggles are without being stigmatized and dismissed.

I am proud that I have support groups with other women who have the same battles as I do. I am grateful that I have people who truly understand my PMDD. I am proud that I am volunteering and supporting PMDD awareness. I am proud that I am not alone. I have to hang in there and stay on the right path and remember just how strong I am.