Hope on the Horizon: My Journey with Chronic and Invisible Illness

Chronic but unseen — my PMDD story

I check and double-check the calendar, but I am not wrong about the dates. I am deep in a PMDD, or pre-menstrual dysphoric disorder, cycle. It happens after ovulation but before my period and lasts anywhere from 10–14 days on average. For those days, I am not myself.

At least, I am not my best self — far from it. I struggle with fatigue, brain fog, anxiety, depression, mood swings, headaches, impulse control issues, anger, rejection sensitivity, body aches and pains, and many other symptoms. There is no cure and no treatment that makes all those symptoms poof and disappear.

But I look back at the calendar and am surprised to realize that I feel fine. It’s been a rare cycle — one where I’ve had minimal symptoms. In fact, it’s so rare that I sit down and think back over the last two weeks to count up my symptoms.

I know that I still have PMDD. I know that next month may be a whole new experience, but I’m starting to have hope that I can manage this thing that’s taken over my life.

My PMDD journey has been a strange one. It began three years ago out of the blue, and there have been more downs than ups on this rollercoaster. I went from being a reasonably healthy adult and single mother to one struggling with a chronic and invisible illness that had me feeling unlike myself for half the month.

For a while, I tried everything — traditional medicine, naturopathy, chiropractic care, acupuncture, nutritional supplements, diet, and trauma therapy. I kept looking for the right combination that would magically transport me back to myself again. At best, a symptom or two would find relief. At worst, I spent a lot of money on absolute nonsense that didn’t help at all and only added to my discouragement.

Treatment for PMDD

But along the way, there have been surprising things that have worked for me. While all bodies are different, I thought I would pass on what’s given me hope on my PMDD journey.

Strong Social Support

I haven’t always had strong social support. For years of my life, I felt fairly isolated. Many of my friends were out of town and even out of the state. My closest friends were a phone call, text, or online chat away, but I didn’t have the ability to sit across from a friend for a chat or to have lunch.

Last year, I signed up for a yoga teacher training. It was something that I felt could help me with my ongoing chronic illness issues. The biggest surprise that came from the training was how much the social support I gained from the experience transformed my PMDD experience.

A few days into the training at a cabin in the mountains, I hit the first day of my PMDD cycle. I experienced severe fatigue, depression, and anxiety. Instead of pressing me to push through it, I was encouraged to rest. My friends and fellow yoga teachers woke me up for meals, and I would get hug after hug as I came downstairs to join the group.

They didn’t expect me to magically feel better. They just held me through the worst of it. That had never happened before. I had never been taken care of through a bad day. I had only had myself to hold me.

When I came back from that trip, I knew that I needed that support. I learned to call friends for lunch when I was struggling instead of trying to handle it alone. I began to ask for help when I needed it. I even started outsourcing some of my yard work over that summer on days when I absolutely wasn’t able to do it myself because of my body’s limitations.

Chronic illness is overwhelming. We need strong support systems to manage everything that comes with having one. I don’t feel dependent. I’m still independent to a fault. But I do feel supported.

“The best thing to say to someone who has PMDD is something that lets them know you understand they do not choose to be that way and you know it isn’t just an excuse.” ~Sara McGinnis

Yoga and the Body/Mind Connection

The yoga journey was a surprising complement to learning to manage chronic illness. Yoga, unlike many fitness programs, doesn’t encourage a no pain, no gain mentality. Instead, we’re encouraged to pay close attention to how we’re feeling and to honor that. Yoga also has a spiritual component. It’s not just a fitness program. It’s a lifestyle that acknowledges the intricate and undeniable connection of body and mind.

There is so much grace in the practice. With chronic illness, it’s easy to feel angry and disconnected from our bodies. It feels like we’re being betrayed. But I began to reconnect to my body during my yoga journey. I began to realize that my body wasn’t betraying me; it was doing its best to cope with an illness. It got easier to have compassion for my body’s suffering, but it also helped me listen to its needs and honor them.

Fitness + Nutrition

There are social media accounts and businesses that will tell you that fitness and nutrition are the only changes you need to make to “cure” your PMDD. Steer clear of them. They are failing to acknowledge the severity of the disorder at the detriment of women’s lives. However, fitness and nutritional changes can help with symptoms as a part of the overall treatment protocol.

My appetite is on a rollercoaster with PMDD. I’ve learned to make healthier choices during the process. While I haven’t completely cut out caffeine and alcohol on my cycle, I have learned to focus on balanced meals and regular snacks during the cycle. I have learned that failing to eat breakfast or eating an unhealthy one can trigger my fatigue. I’m paying attention to how I feel after I eat certain foods and honoring that.

My fitness journey has been much the same. I’m paying attention to how I feel. Some days, I’m capable of my regular workouts, and other days, I’m lucky if I can get through a restorative yoga practice. I have learned that exercise can sometimes cut my fatigue short if I catch it early enough. Jumping on my Peloton bike when the first inkling of fatigue hits is sometimes enough to keep it at bay entirely. It doesn’t always work, but it can help at times.

Antidepressants and PMDD

I cannot talk about PMDD and not include the single most helpful factor in my treatment. I take an SSRI cyclically, from the start of my luteal phase until a couple of days into my period. I’m not exaggerating when I say that Zoloft has saved my life.

I used to be somewhat dismissive of antidepressants as treatment, particularly as a former therapist who saw many people embrace them while failing to combine it with therapy. But my PMDD came with suicide ideation like I’ve never experienced before. Combined with a lack of impulse control, I scared the hell out of myself each month.

Zoloft has completely eradicated my suicidal thoughts. I just don’t have them anymore. Every time I see some self-proclaimed PMDD expert encourage people to skip SSRIs without even trying them, I wonder how they can be so reckless. PMDD claims the lives of more people than we’ll ever know due to its underdiagnosed nature. I’m not willing to run the risk of losing my life because of a mistaken prejudice against modern medicine that has shown to be effective in the treatment of this disorder.

Oral Contraceptives

That one month where I had minimal discomfort didn’t last if you’re wondering, but I did find something else that worked to alleviate nearly all of my PMDD symptoms. After several months of experiencing increasingly challenging levels of fatigue, I went back to my gynecologist and requested that she check my thyroid and vitamin levels as well as anything else that could explain why this one symptom had increased in severity. After running all the tests and finding no definitive answers, she suggested that perimenopause could be creating further instability in my hormones. She suggested that an oral contraceptive could help.

I’ve used birth control in the past — sometimes to disastrous results when my mood swings would worsen. But this time, I was willing to try anything. I ended up on a low-dose progesterone-only pill, and after two weeks, I no longer had the severe and chronic fatigue. After months of suffering, I found complete relief. I also noticed that most of my other symptoms faded with the combined dose of my oral contraceptive and my antidepressant.

Trauma Therapy

If you look at the research on PMDD, you’ll see that many people with this diagnosis also share a history of trauma. This is definitely a chicken-and-egg situation because we’re not really sure if PMDD came first or if the trauma did. However, I can strongly recommend trauma therapy for anyone who has PMDD and has experienced trauma.

In fact, you’ll find some practitioners who tell you that addressing the trauma alone will magically cure PMDD. Run if you run across them. They are ignoring that PMDD is a neuroendocrine disorder. Trauma therapy can certainly help us, but it’s not considered a cure.

Trauma therapy changed my life. I’m not as reactive as I once was. I’m better able to maintain healthier relationships. I have much improved coping skills. It didn’t cure my PMDD, but it did help me find strategies to manage it while addressing the trauma that could either have caused it or could have exacerbated it.

PMDD and Me: A Journey of Hope and Healing

I don’t know what the next few years will hold. I’m hoping menopause will come early and end my PMDD journey. In the meantime, I’m learning to cultivate hope in spaces that once held only dread. There is no cure, but there is hope.

The community of PMDD warriors is strong, and we’re growing in numbers as more individuals recognize that they share these symptoms. We’re spreading awareness and advocating for ourselves. The disorder is invisible, but we are not. We are out here trying everything we can to live well, and we’re speaking out for the women who did not survive it.

I don’t want to define myself by PMDD, but I also can’t push it to the side and pretend like it hasn’t impacted my entire life. I’ve had to confront a health privilege I didn’t even realize I had with all the ableist ideas that come with it. I’ve had to adjust to changing moods and energy levels. I’ve had to accept that I am not the same — and that’s okay.

Some days hold more hope than others. I still hope that someone somewhere will put the time, money, and resources into finding a cure for this potentially deadly disorder. I spread awareness and talk openly about my journey in hopes that it connects someone else to hope in theirs.

The road ahead may seem long, but it doesn’t have to be lonely. There are more of us out there than we may ever know. We can encourage each other and help others understand how to be better people and partners to those with chronic and invisible illnesses.