My medical history is a years-old graveyard of pregnancy tests and EKGs. Fainting spells, severe joint pain, chest pain, dizziness, fatigue: these were the symptoms I carried with me from clinic to clinic and hospital to hospital as I begged doctors to tell me what was wrong. Their explanations varied, ranging from menstrual hormones to physical manifestations of anxiety. For years, my concerns were brushed off. It didn’t matter what I said; it didn’t matter what I felt. It didn’t matter that my knees would give out if I ran without a brace or that the simple act of standing was a dizzying one. It didn’t matter that I spent every night with my legs up against the wall to ease the swelling and pain or that it felt like my heart was twitching in my chest. My labs were fine—on paper, I was perfectly healthy.

Arthritis, Lupus, Cancer. Every surface blood test I ever had came back clean. For years, I thought I was dying and they just couldn’t see it: the untraceable rot that lined my joints and veins, spreading through my body like mold. I spent many nights awake from the pain, whispering drafts of a will into the dark. Sometimes I look back at those nights and think, “Maybe I was being dramatic.” But death and pain are so often intertwined that when I experienced one, it only made sense to expect the other. Many of the doctors I saw thought that I was, in one of their own words, insane. I was sent to three different therapists before finally being referred to a rheumatologist the summer before my sophomore year. We drove nearly two hours to get to the clinic where I would be diagnosed with Joint Hypermobility Syndrome, a connective tissue disorder and genetic condition.

General joint hypermobility exists in around half of the global population. However, only around ten percent of said population experience chronic musculoskeletal pain, fatigue, and other ugly symptoms that transform a cool party trick into an existence of pain. When I first received the diagnosis, I was so relieved and, while happy isn’t the right word, it was something close. For the first time in years, I felt validated by a medical professional. I celebrated this diagnosis by buying a Care Bear I still hug when I’m feeling particularly symptomatic. Due to the ineffectiveness of over-the-counter painkillers such as Advil and Ibuprofen, I had to be prescribed Amitriptyline before bed to manage my chronic pain and difficulty sleeping. However, even with the acknowledgement of this condition and the beginnings of treatment, it was a difficult thing to accept and adjust to.

To make matters somewhat worse, as time passed, certain symptoms progressed and discoveries were made: dizziness, vertigo, blood pooling, and fainting, while seen in people with JHS, are not symptoms that belong to this syndrome, but rather the dysautonomia conditions that commonly accompany it. For around a year now, I have been attending various doctor and cardiologist appointments, filled with even more EKGs, echocardiograms, and Holter monitors, to further explore these symptoms and determine the cause of them, our current theory being Postural Orthostatic Tachycardia Syndrome (POTS).

Incurable and composed of good and bad days, it often seems that no matter what I do, I will never truly feel good or at ease in my body. Even being still is now a painful effort, one that can only be combated by the ache of moving. An utter conundrum I’m still learning to work with. Everything seems to affect me. My joints shift in my sleep, leaving me clicking and aching by the time I wake up. The cold of winter leaves me stiff and on the verge of tears, regardless of what I do or don’t do. The heat of the summer spins me around until I’m lightheaded and leaning on walls and chairs. Nauseous, tired, and aching, I’m never not in a state of pain or discomfort.

The physical challenges are present and tangible, but still, I think it’s the unspoken isolation and strange sense of grief that I struggle with the most. I used to do so much. I used to be so much. But ever since the emergence and diagnosis of these symptoms, it feels like my capacity for life has shrunk. I used to play softball. And I was good. And I loved it. I loved it so much it became instinctual to me—the glove and bat an extension of my body. But I would spend the time between games crying as I tried to pop my hip or my ankle back into place from where they unknowingly slipped as I played. And when it got hot, I would spend twenty minutes of every practice on the bench, shaking as I tried not to faint. It took a lot from me to quit. But it took too much from me to stay. It takes a lot out of me to do anything at all. My energy is measured and easily spent. I feel alone and like a burden more often than not. I see the way my mom carefully watches me when we go out—like she’s terrified she’ll find me on the floor of a restaurant bathroom fighting for consciousness again. I catch my sister’s concerned gaze when I spend too long sitting in the middle of the stairs as I wait for the pain in my knees to subside. I feel my dad’s rough hand against my hair as I walk out of appointment after appointment, guilty for wasting the time they should be using to work and live their own lives. Sometimes I even dread school and seeing my friends because it usually means pushing through whatever I feel like it’s nothing, because this is my weight, my pain, and ultimately my grief to carry, not theirs.

If only, if only, if only. Those words hide in the crevices of my skull and ring out more often than I would like. “Could I have been more?” is a question I’ve been asking myself for a long time. But I’ve come to understand that the “more” I wanted is not a binary concept. It shifts, adapting to my life and my experiences, and what I’m willing to take and leave behind. Just as it does for anybody else. It is only the circumstances in which I do it that differ. I don’t play softball anymore, but I still have my glove and my bat, and I still take it out with my dad every so often. I don’t have all weekend tournaments anymore, but I skate and I swim, the lower impact of the wheels and full compression of the water allows me to exercise enjoyably without tearing my body apart. I have a drawer of compression socks and sleeves to help with my circulation and stability. I keep a person and certain essentials with me in case I flare up outside the house. I make sure to track my symptoms through my phone and take electrolytes throughout the day. I can’t exactly choose my good or bad days; I can only roll with the punches as they come. I couldn’t control the development of this condition and the malfunction in my autonomic system, but I can control how I deal with it. And sometimes that makes all the difference in the world. I take my victories when I can, and, most of all, I live my life, stretching my capacity for it bit by bit. As frustrating as it can be, I adapt to what my body feels and cope how I can. I enjoy the good days and brace for the bad, and though it can be an isolating experience, I try to remember that I’m not alone.

I have my family, who will hold me when I stumble, and my friends who are there to listen to me when the weight in my chest gets a little too heavy. And I have knowledge of and advice from people who are going through the same things. I still remember the first time I came across a video of someone who had gone through a similar experience I had. I thought the doctors were right before I watched it, that maybe I was just crazy and overly anxious. But I knew I wasn’t, and as I watched that video, I allowed myself to believe it. It felt as if something had shifted in my ribs, letting my lungs expand a little further. I cradled their words and their story in my chest and began searching for more people and demanding more from my health providers.

I was so easily liberated by hearing of someone else’s journey that I now wish to share my own. For a long time, I was hesitant to ever let this condition bleed into the stories and poems I write. But after realizing that someone could potentially find solace or company in my experience, the same way I once did, I am now ready to allow my passions to be inspired by this part of my life. I now understand that I am not alone in my pain; I am not alone in my grief. It’s okay to feel like my capacity for life has shrunk. I just have to remember that I have the strength, the courage, and the support to stretch it out. Inch by inch. Breath by breath.