When you’re young, you assume your body will mostly cooperate with you. That it will get you out of bed, carry you through work shifts, let you dance or shop or make plans without thinking twice. I was twenty-five when mine stopped. One day, I was tired. The next day, I was sick in a way that never went away.
This isn’t the story of an accident or a single catastrophic event. It’s the story of a body quietly unraveling, and of how quickly everything you take for granted can disappear. I went from an independent woman who loved her job and her freedom to someone who spends entire days in bed, rationing the energy it takes to shower.
This is what it’s like to become disabled all at once, and to live in the in-between, where you’re too sick to be normal, but not always sick enough to be believed.
The Signs
We always knew something was wrong. My body never really worked the way it was supposed to, but for most of my life, the symptoms were manageable. I grew up in survival mode, and I think that held me together longer than it should have. I’ve always had joints that dislocated for no good reason, migraines that would flatten me for days, fatigue I couldn’t explain.
Over the years, the joint pain got worse, but I kept pushing through. I used to work multiple jobs. Then it got to the point where I couldn’t handle ten-hour days anymore. I couldn’t pull a double shift like I used to.
I switched to night serving shifts, thinking maybe fewer hours would help. Then I got sick, just another bout of losing my voice, something that had happened plenty of times before, and I ended up bedridden for a week.
Working in food service, you get used to catching everything that goes around. But this time, I didn’t bounce back.
Part of me wonders if it was the heat of the impending summer that finally pushed me over the edge, or if my body had just run out of whatever was keeping it going.
Why didn’t I get help sooner?
Many people ask why I didn’t go to the doctor sooner. Why I waited until my body completely gave out before I started looking for answers.
For me, there were a lot of reasons.
First, I was scared. I grew up believing that everything happening to me was somehow my fault. That if I were stronger, smarter, more disciplined, I could make it stop. It was easier to think I was lazy or dramatic than to consider something might really be wrong. I was raised a glass child, with an older sister who had cerebral palsy. After ten years of hospital visits before I was born, my mother was already ‘done’ by the time she got to me. There was no hope for invisible disabilities to see the light in that house. My birth mother had taught me to be afraid of doctors. She didn’t want me seeking help when I was sick or when I dislocated something. I learned early that the less I needed, the more manageable I was. So I stayed that way.
I was also legally considered orphan by the time I turned 18. When my guardian died, I was sixteen. I had no insurance, no family plan, no one to help me navigate the medical system. I was on my own.
When I finally did start seeing specialists as a teenager, it didn’t go well. I was having twenty migraines a month, and none of the medications worked. The neurologist refused to listen. He prescribed a long list of drugs. some of which should never have been given to someone with my history. He looked me in the eye and said, “You know, I have a daughter your age,” and then dismissed everything I tried to tell him.
After that, I stopped trying. I stopped believing doctors could help. I thought it was better to tough it out than to risk being humiliated again.
So I did. For years. Until I couldn’t anymore.
My Diagnosis Journey
When I finally ended up in the ER, I was terrified they’d find something catastrophic, or worse, that they’d find nothing at all. They ran test after test, and everything came back normal. I was having a panic attack. I don’t do well in hospitals, since my guardian died. I haven’t trusted any medical building since. Sitting there in the hospital gown, I felt sixteen again, helpless and bracing for bad news.
And of course… it was April 1st.
But then the ER doctor did something that surprised me: he actually listened. He asked questions. He didn’t assume I was exaggerating or drug-seeking or just anxious. He asked if I’d ever heard of POTS. I had. He told me it was a chronic form of dysautonomia that could have been triggered by COVID. He assured me I was not going to die and said I needed to see a cardiologist.
That was the first moment it sank in that this wasn’t going to be something I could just rest my way out of.
A few weeks later, I met with the cardiologist. He believed me immediately. He didn’t question my symptoms or treat me like I was making it up. He diagnosed me with Hypermobility Spectrum Disorder on the spot. He said I probably had POTS caused by my hypermobility issues. He knew because he himself has Hypermobile Ehlers-Danlos syndrome. I’ve thought about that a lot: how sometimes it takes a sick doctor to see that you aren’t making this up. I remember sitting there, trying to keep my face neutral while my mind spiraled.
It was surreal, hearing someone say the words “chronic” and “lifelong.” Like a movie scene where the audio cuts out and you can see mouths moving but can’t hear what they’re saying. Even though I’d suspected for years that something was wrong, having it confirmed felt like crossing a line I couldn’t uncross. It was different than dealing with it because I had not gone to a doctor. This was permanent.
I wasn’t just tired anymore. I wasn’t just stressed or out of shape or unlucky. I was disabled.
The Year I Finally Got Answers
In 2025, I have seen more doctors than I had in the rest of my life combined. A psychiatrist, a cardiologist, a general practitioner, a gynecologist. All of them were firsts for me and none of them will be the last.
It felt like every appointment peeled back another layer of the story I’d been telling myself for years. The story that all of this was somehow my fault. That I was just lazy. That if I tried harder, pushed more, stayed positive enough, my body would finally start cooperating.
Instead, I got answers.
I learned I have PCOS, POTS, Hypermobility Spectrum Disorder, bipolar II disorder, PTSD, generalized anxiety, and Hidradenitis Suppurativa. A list so long it doesn’t fit on a single line in my medical chart.
We’re still waiting on more specialists. There are still more tests to run, more questions to ask, more check-ins to schedule. But even with all the uncertainty, it’s been a relief to have names for what’s happening to me.
To know that I am not lazy.
To know that this isn’t a moral failing or a lack of willpower.
It’s my body, and it was never my fault.
Despite it all, I had always outperformed many of my peers. Even when my body was falling apart in ways I didn’t have language for, I was working multiple jobs, running nonprofits, showing up for everyone around me. I was the person who was always involved in everything, organizing, volunteering, making sure things got done. It didn’t matter if my joints were dislocating or if I hadn’t slept in days because of a migraine. I still showed up. I still held everything together. This is probably partially why I always felt so different compared to those around me and had very little compassion for excuses.
Sometimes I think that’s part of why it took me so long to admit how sick I was. When you learn to equate your worth with what you can accomplish, slowing down feels like failure. Rest feels like weakness. It’s only now, with all these diagnoses in front of me, that I can look back and see how much I was already carrying. I always had this unexplainable fear in me that if I slowed down, I would never start again. That my fire would burn out so to speak.
And well… here we are.
My Reality
I really have to be grateful I have had so many amazing doctors. Most POTS patients take 5-6 years to get diagnosed. And I walked into the ER once and went home with answers. But even with a diagnosis, I am trapped in the in-between. Too sick to function. Not sick enough to be recognized.
I don’t like to admit how envious I am. I hear my friends complain about getting up for work, and I want to scream. I would give almost anything to wake up exhausted but able. To drive to a job I love, to stand on my own two feet and serve tables like I used to. When my partner comes home from Longhorn and talks about a bad shift, it feels like salt in a wound. We used to do that job together. I was good at it. It made me feel competent, necessary, connected to other people. Now, I can’t even make it through a grocery store without my heart hammering out of rhythm.
Most days aren’t good or bad. They’re something in between. On a good day, I wake up tired but functional. My body is heavy, but it still moves. I can shower and do laundry on the same day or even drive to the store. I can almost pretend things are normal. On a bad day, I don’t get out of bed at all. I wake up with a migraine so sharp I can’t look at a screen. My skin feels feverish. I overheat just from standing. Time blurs until I don’t know whether it’s morning or night.
The hardest part is the constant negotiation. I have to plan everything around symptoms that shift by the hour. Will I shower today or save that energy to cook? If I clean, will I end up in bed tomorrow? Even hope takes energy. Even small joys can leave me depleted.
There are things I don’t even try anymore. I used to go to music festivals, standing in a crowd for hours, singing along until my throat was raw. I still have the ticket stubs, reminders of the life I thought I’d keep. I bought Warp Tour passes and Renaissance Faire tickets because I believed I’d get better. Now, even with a wheelchair, I can only risk brief outings, always calculating what it will cost me later.
I have had to try hard to find joy elsewhere. For me writing has been a major source of comfort and a great creative outlet. I also had to accept that dreaming of mobility aids meant it was time to use them. I recently purchased my first wheelchair to use for big events out as well as my first shower chair. I have felt such deep shame in not being able to do things, so I have had to unpack a lot of ablest ideas I have about value.
A major struggle for me has been refusing to mask my pain anymore. A lot of people are confused about why I’m “suddenly” so sick. They don’t realize I have been unwell for years, just good at masking it. When I finally stopped pretending, when I let the truth show on my face, I watched relationships slip away. It’s easier for people to believe you’re fine if you look fine.
There is no name for this in-between. Not well enough to participate. Not sick enough to be seen. But I am here anyway, learning how to build a life inside the half-light. Even if it doesn’t look like living to anyone else, it’s still mine.
I am learning to stop apologizing for surviving.
Even if it’s not the life I planned, it’s still a life. And I am still here to live it.
Update From A Year Later
It has been a little over a year since I wrote this, and for a while, I got better. My world started getting bigger again. I learned how to work with my body instead of constantly fighting it. I found medications that helped. I learned my limits, figured out accommodations, and stopped treating mobility aids like evidence that I had failed. I started leaving the house more. I traveled. I went to poetry readings. I planted a garden. I built a life that looked different from the one I had lost, but increasingly felt like mine.
There were moments when I caught myself doing something ordinary and realized I wasn’t thinking about my body at all. That felt enormous.
I think part of me started believing I had made it through the worst of it. I knew I was still disabled. I knew chronic meant chronic. But when you have enough good days in a row, it is very easy to start imagining that maybe this is your new baseline. Maybe you’ve finally learned all the rules. Maybe if you take your medication and drink enough water and listen carefully enough to your body, you can keep everything balanced.
And then, recently, it all collapsed again.
My symptoms have become harder to manage. Despite being on birth control with no placebo pills, I had my “period” for three months. I am having severe allergic reactions randomly. Things I had gotten back have started slipping out of reach. Once again, I am making calculations about what my body can tolerate. Once again, my days are being organized around symptoms instead of plans.
In some ways, this has been harder than getting sick the first time.
The first time, I was grieving a life I didn’t know I could lose. This time, I know exactly what I’m losing because I had some of it back. There is a particular cruelty in getting better just long enough to remember what freedom feels like. But there is something else I know now that I didn’t know when I originally wrote this essay.
I have survived this before.
A year ago, I thought acceptance meant reaching some peaceful endpoint where I would finally understand my disabled body and stop grieving the person I used to be. I don’t think that anymore. Chronic illness doesn’t give you an ending neat enough for that. Bodies change. Symptoms change. Capacity expands and contracts. Sometimes you celebrate getting something back, and sometimes you have to learn how to lose it again.
Maybe acceptance isn’t making peace with one permanent version of your life. Maybe it’s learning that your life can change shape without ceasing to be yours. I don’t know whether this flare will last another week, another month, or become another version of normal. I don’t know whether a year from now I’ll read this update from a body that is doing better again.
I hope I will.
But the person who originally wrote this essay believed she had to learn how to live in the half-light. A year later, I think I’m finally understanding that the light moves. And I am still here when it does.
The Point
You may be wondering, what was the point of this writing? So what you are sick?
I wrote this so no one else has to feel like the only one living in the half-light.
When I first got my diagnoses, there was a period of time when I seriously considered medically assisted suicide. I didn’t want to live a life of promised pain, of limitations I hadn’t chosen, of watching everything I loved slip away. It felt easier to imagine ending it on my own terms than to face the uncertainty of a future I hadn’t planned for. I don’t share this because I’m ashamed, I share it because it was real. Because sometimes disability isn’t just about learning to adapt. It’s about grieving so deeply that you wonder if surviving is worth the cost. And if you’ve ever felt that way, you are not alone.
It’s important to find your people, the ones who understand that a good day doesn’t mean you’re cured, and that a bad day isn’t your fault. The ones who won’t question your reality or measure your worth by what you can produce. At some point, you have to accept the things you cannot change. Your life will always be different now. It may never look like the version you imagined, and there will be days that feel unbearably heavy. But different doesn’t mean worthless. It doesn’t mean empty. There is still room here for connection, for creativity, for moments that feel like peace. Your life is still your own, and it is still worth living.