Emerging from the Haze: Navigating Mental and Emotional Wellbeing with PMDD, ADHD, Type 1 Diabetes, and Ankylosing Spondylitis
“Ah! It’s like coming out of the haze every month.”
That’s how I often describe my experience living with premenstrual dysphoric disorder (PMDD). It’s an apt metaphor for the cloud of emotional and physical intensity that dominates a significant part of my life. However, that haze rarely lifts in a predictable or consistent way. Add to that the challenges of managing ADHD, T1D, and ankylosing spondylitis (AS), and my days often feel like an intricate juggling act.
PMDD and ADHD: A Hormonal Tug-of-War
PMDD alone is a heavy load to bear. It’s not just “PMS on steroids”—it’s an emotional, mental, and physical rollercoaster. When adding ADHD to the mix, the unpredictability of it all intensifies. My ADHD medication—Adderall—worked wonders, that is until I discontinued taking birth control. Now, I’ve noticed its effectiveness diminishes and feels different during certain times of my menstrual cycle. I’ve also come to realize that stimulant medication may exacerbate my ankylosing spondylitis symptoms and menstrual cramps! It’s a maddening cycle: one condition exacerbates the other, leaving me navigating a storm of shifting symptoms with little consistency.
Last year, I decided to experiment with alternative approaches. I stopped taking Adderall in March of 2024 and spent the next eight months exploring non-stimulant medications, antidepressants, and even non-medication strategies. While I learned a lot during that period, none of those approaches provided the stability I needed. By December, I was back on Adderall, but I’ve recently discovered that the stimulant medication may be contributing to my worsening menstrual irregularities, cramps, and AS flare ups.
Living with Ankylosing Spondylitis: Movement is Medicine
Ankylosing spondylitis is an autoimmune form of arthritis that affects my spine and nearly every joint in my body. For me, AS manifests as chronic low back pain, inflammation flare-ups, and stiffness—a daily reminder that my body needs movement to function. Movement truly is medicine for me. Yoga, walking, and stretching are not just wellness practices; they’re survival strategies. Without them, I become “stiff as a board,” making even the simplest tasks feel excruciating at times. From the outside, I appear healthy as can be — especially when hanging upside down in aerial or acro yoga. I’m pretty flexible and decently strong, and the truth of the matter is people with ankylosing spondylitis (AS) need to move to help relieve pain and stiffness and to improve their mobility and function. Here are 4 reasons why I consider movement as medicine for my experience with AS:
Pain Relief: Pain from AS is worse during rest or inactivity, and usually improves with movement.
Improved mobility: Exercise can help improve spinal mobility and reduce the risk of permanent joint damage.
Reduced inflammation: Exercise can reduce disease activity and inflammation. As inflammation becomes systemic, progression of AS can lead to vertebral fusion “ankylosis,” skin conditions, gastrointestinal issues, cardiovascular concerns, and eye inflammation.
Improved function: Exercise can improve overall function, including chest expansion and cardiorespiratory performance. Even breathing exercises can help maintain flexibility in the rib joints — ✨ hello, pranayama practice! ✨
In addition to low back pain and stiffness, I experience redness, swelling, bruising, and burning in my joints. These symptoms are particularly visible in my fingers and toes. During an AS flare, my finger joints swell a lot. Sometimes, I’m unable to grip objects or close my hand because my joints are so swollen, inflammed, and tight. Tasks like, pulling insulin from the vial to change my insulin pump become difficult and sometimes painful. Occasionally, I even develop small skin burns on my wrists and forearms.
I was diagnosed with Ankylosing Spondylitis after testing positive for the HLA-B27 antigen in April of 2020, but I think I may have been living with this condition for longer than I’ve been living with type 1 diabetes — and I’ve been living with T1D for over 2 decades. Until receiving an AS diagnosis, I experienced symptoms and flare-ups all throughout my twenties without a clear explanation. I can even think back to experiencing symptoms when I was a teenager.
It’s important to note that the progression of AS varies greatly between individuals, with some experiencing mild symptoms and progression while others may experience rapid progression and develop severe complications. Overall, I live with persistent low back pain and occasional flare-ups that affect the joints in my fingers, toes, wrist, knees, shoulders, and hips. These symptoms can make mornings challenging, particularly during flare-ups.
When the stiffness of AS flares up, and I’m simultaneously dealing with the sluggishness of ADHD, getting out of bed can feel like scaling a mountain. Not to mention the periodic cycles of insomnia or increased need for sleep due to hormonal fluctuation as a menstruating person with PMDD. During these times, I lean on integrative measures:
Diet: Returning to my Whole30 or Paleo basics during flare-ups to reduce inflammation.
Supplements: Turmeric and black pepper to combat joint pain naturally.
Medication: Occasionally turning to NSAIDs when needed to reduce the pain.
Meditation: A daily practice to calm my mind and ease my body’s tension.
Managing Diabetes: The Silent Burnout
I’ve noticed that at times, I’m living in a mild state of diabetes burnout, especially when the symptoms of the other conditions I live with are exacerbated. The constant need for vigilance—monitoring blood sugar, counting carbs, dosing insulin—can feel overwhelming when my other conditions are flaring up. It’s as if my body and mind are at war with one another, leaving little room for managing diabetes with the attention it demands.
My mood, often affected by PMDD or ADHD, can impact how I manage diabetes. On harder days, tasks like changing my CGM and insulin pump or pre-bolusing insulin feel dreadful. It’s a vicious cycle: poor diabetes management affects my mood and energy levels, which in turn makes it even harder to care for myself.
To combat this, I try to:
Trust in the Automation of DIY Loop: DIY Loop technology has saved my life (probably quite literally) in circumstances where I simply cannot remember all the things or give diabetes the attention it needs.
Build a Routine: Sticking to a consistent daily schedule reduces decision fatigue, helps me get through tough times, and note what’s working and what isn’t.
Practice Self-Compassion: Allowing myself grace on the hard days reminds me that perfection isn’t the goal—progress is.
Seek Support: Being able to share about the challenges in living with these symptoms is helpful. I wish I could remember where I learned — helped, hugged, or heard. Talking with my healthcare team, friends, and family to be helped, hugged, or heard helps me feel less alone in the struggle.
Even with these strategies, there are days when it’s all too much. And that’s okay. Acknowledging the burnout and finding small ways to move forward has been key to managing the toll of it all.
Professional Life and Navigating Healthcare
I try to make the best of my circumstances, live life from an integrative approach, and I tend to hold faith + smile through a lot of pain. Unless someone zooms in on my swollen, reddened fingers during an AS flare-up or catches a glimpse of the occasional rollercoaster Dexcom graph on my phone, they wouldn’t know the challenges I face. This invisibility of my chronic conditions has made it incredibly difficult to navigate professional life and healthcare.
I don’t qualify for disability financial assistance in the United States because I’m not visibly or consistently “disabled enough” by societal standards. Yet, managing multiple chronic conditions while trying to survive in a world that isn’t set up to adapt to my needs is exhausting. The emotional and physical toll can feel insurmountable at times, but I do the best I can.
The unpredictable nature of my conditions means I have to constantly strategize—scheduling important tasks around my energy levels, flare-ups, and mental clarity. Flexibility isn’t just a perk; it’s a necessity. In healthcare, advocating for myself has become a full-time job. Explaining how these conditions interact, why certain treatments don’t work for me, and pushing for solutions tailored to my unique needs often feels like an uphill battle.
Despite these challenges, I’ve learned to navigate these systems with resilience and determination. Sharing my story is one way I hope to shed light on the invisible struggles so many people with chronic conditions face daily.
The Intersection of Chronic Conditions
Navigating these four conditions—PMDD, ADHD, Type 1 Diabetes, and AS—is a constant balancing act. Each one impacts the other in expected and unexpected ways. It’s a layered complexity that requires patience, self-compassion, strategy, communication, adaptability, resiliency, and constant recalibration.
Finding My Rhythm
Despite these challenges, these are my cornerstones:
Movement Every Day: Even on my worst days, I prioritize gentle movement. A short and gentle yoga session or a slow walk can break the cycle of stiffness and help me reconnect with my body.
Mindfulness Practices: Daily meditation has become a cornerstone of my self-care routine. It helps me manage the mental chaos of ADHD while creating a sense of calm amidst PMDD’s storms.
Nutrition Focus: While it’s not always easy to maintain, an anti-inflammatory diet is crucial in managing and treating my AS flare-ups. Combining a paleo-influenced diet with supplements like turmeric + black pepper has helped me manage pain and inflammation through a nutrition lens.
Flexible Medication Strategies: Understanding that my ADHD medication might be less effective during certain times has helped me adjust my expectations and plan accordingly. It’s a work in progress, but being mindful of these patterns has made a difference.
Embracing Grace + Acceptance, along a Path to Authenticity
Managing mental and emotional wellbeing with the co-existence of invisible conditions like PMDD, ADHD, Type 1 Diabetes, and AS is not about perfection; it’s about grace and acceptance. It’s about acknowledging the haze, finding the tools that help clear it, and extending compassion to myself when things don’t go as planned. The combination of PMDD, ADHD, ankylosing spondylitis, and Type 1 diabetes may be complex, but it has also provided me a path to authenticity.
Every month, I emerge from the haze. And while the path isn’t always clear, I continue to walk it—one step, one breath, and one movement at a time.
