At 28, I find myself living alongside a body and mind that sometimes feel like they're working together against me. Each day involves managing an array of unseen conditions that complicate my life—dyscalculia, OCD, various anxiety disorders, slowed psychomotor functions, restricted short-term memory, challenges with spatial navigation, along with what might be undiagnosed ASD. All these elements combine to create a daily experience marked by complexity, exhaustion, and frequent misunderstandings.
Included among these issues are chronic conditions such as endometriosis, polycystic ovary syndrome (PCOS), irritable bowel syndrome (IBS), recurring cystitis, and painful bladder syndrome (also known as interstitial cystitis). It feels like my mind is constantly whirling. Meanwhile, my physical state seems to be working against me. Yet, I am striving to maintain stability amidst everything. The purpose of this piece is to provide a platform for sharing these experiences and to highlight the often unseen yet profoundly significant nature of this reality.
Everything gradually fell into place.
It was not just one instant when everything shifted. The signs appeared sequentially, initially faint but later growing more noticeable.
Ever since I was young, I noticed some indications that make more sense now: extreme sensitivity to sound and brightness, trouble navigating places, grasping indirect meanings, and keeping up with specific discussions. Additionally, I exhibited rigid behaviors, required structured routines, and retreated internally under overwhelming situations. These symptoms of ASD were consistently part of me but never formally identified until later. Similarly, my dyscalculia has always been quite pronounced; I struggled significantly with comprehending numerical concepts, telling time, and adhering to directions involving measurements or figures.
As a teen, when I got my first period, the initial indications were endometriosis And with PCOS came symptoms such as pelvic pain, severe exhaustion, digestion issues, and hormonal fluctuations. Like so many others, I thought these were just typical experiences. Hence, I chose to remain silent about them. During this period, my struggles with anxiety started manifesting too. There were persistent anxieties, initial panic episodes, obsessive compulsive disorder characterized by frequent checks, and recurring intrusive thoughts.
Gradually, the symptoms increased. I started seeking consultations, searching for explanations. PCOS In 2018, I received a diagnosis for something else, followed by endometriosis and irritable bowel syndrome in 2021. Cognitive issues such as psychomotor slowing, restricted working memory, and trouble navigating were identified alongside dyscalculia all in 2021. Just recently, through an internship with an autism support organization, they mentioned the potential link between these symptoms and ASD, which have been evident from early years. Currently, I am undergoing evaluation for this condition, providing insights into various facets of how I operate.
I came to understand that I was not just dealing with one condition, but rather a intricate mix impacting my physical health, mental state, emotional well-being, and interpersonal connections. This multifaceted nature warranted attention and understanding.
A brain perpetually overwhelmed
My anxiety disorders and OCD hold considerable sway over my everyday experiences. My thoughts sprint uncontrollably, and concerns pop up unexpectedly. While mental rituals occasionally bring some comfort, they often leave me drained.
Living with persistent hypersensitivity means that everyday stimuli like sounds, lights, and movements frequently overwhelm me. Social settings particularly drain my energy due to the sheer number of people, emotions, and subtleties involved. Abstract language, hints, and sarcasm pose challenges for me; as I tend to interpret things quite literally, this can lead to confusion and heightened stress levels.
It’s extremely challenging for me to comprehend, handle, and regulate my feelings. At times, I experience everything with overwhelming intensity. On other occasions, I struggle to identify or articulate what I’m actually experiencing emotionally. My emotions surge abruptly, catching me off guard, then flood over me unexpectedly. These sudden emotional surges can lead to obstacles, breakdowns, or total withdrawal. Since my reactions aren’t consistently predictable, I frequently sense disconnection, misinterpretation, or self-reproach.
Alterations in daily routines, shifts in schedules, unexpected occurrences, or new settings can all lead to significant stress. Having consistent touchstones helps me maintain a sense of security. Whenever there’s an abrupt change, I tend to become discomposed, feeling swamped with emotions, and it requires some duration for me to restore equilibrium.
In addition to these challenges, I face cognitive hurdles such as slowed psychomotor functions, restricted working memory, dyscalculia, and trouble navigating unfamiliar spaces. While these might be straightforward issues for others, they turn into significant barriers for me.
A body that amplifies alert indicators
Even as my mind battles through these challenges, my physical health also endures similar difficulties. Endometriosis leads to suffering from pelvic and lower back pain, issues with digestion and urination, persistent exhaustion, dyspareunia, along with unrelenting unease linked to painful bladder syndrome (or interstitial cystitis). Cystitis often occurs unexpectedly and can make whole days unbearable.
Polycystic Ovary Syndrome leads to constant tiredness, erratic and prolonged menstrual cycles, acne outbreaks, excess facial hair, hair thinning, greasy hair, profuse perspiration, and hormone-induced stress. These symptoms impact my vitality, self-esteem, and everyday well-being.
Irritable Bowel Syndrome compounds the issue with persistent constipation, swelling, abdominal gas, acid reflux, and an inability to digest lactose. Each dining experience turns into a careful computation where you must predict, adjust, and pray. Yet, despite these precautions, the body can still respond negatively at times.
This combination leads to unending stress. The body endures suffering, while the mind spins out of control. Overwhelmed mentally, the body ends up bearing the brunt. There’s an ongoing cycle switching between bodily discomfort and psychological pressure.
Adapting to life with everything going on
I won’t claim to have discovered miraculous answers. They simply aren’t available for me. Every single day, I grapple with these challenges across various aspects of my life—both personal and work-related. Balancing my schedule, keeping up a routine, handling social interactions, performing tasks, focusing—it’s all incredibly demanding and beyond what most can fathom. There are moments when I feel disconnected, swamped, ineffective. Nonetheless, I put forth my utmost efforts.
Even so, I’m pressing ahead at my own speed. I am discovering more about myself, recognizing what supports me, and honoring my boundaries. I am connecting with supportive individuals and selecting settings where I don’t have to constantly adapt excessively. Additionally, I’m attempting to be gentler with myself and cease feeling remorse for leading a different life.
Creating this piece allows me to acknowledge what I am experiencing openly, rather than keeping it hidden. This writing is meant for individuals who might see their own struggles reflected here and may find some solace knowing they’re not alone. Additionally, it’s aimed at those seeking understanding even though they haven’t faced similar challenges. Thanks for taking the time to read. My journey continues amid my suffering, rapid thoughts, moments of forgetfulness, and a body prone to quick exhaustion. Yet, alongside all this, there remains a sense of resilience. For confronting life’s difficulties head-on in an environment ill-suited for such battles requires immense bravery.