2026. I haven’t logged in since 2024. My account auto-renewed (surprise!), so now that I have another year already paid for, maybe that’s a sign I start to write again.

So here I am. I’ve been thinking how much I desperately need to start writing – I’ve had so many thoughts flooding my mind lately that it’s difficult to process anything, and instead I lose sleep. What used to help was writing — getting everything out ‘on paper’ to assist my life problem solving. Or coping. Whatever you want to call it.

So let’s catch up with all I need to process.

Crohn’s. My ball and chain, with me for life. It’s become a huge part of my identity over the past 22 years. I still think about my first ER visits and how the doctors thought I had appendicitis. Man, how I wish that would have been it. Years of life- recovered. What would my life even look like if I hadn’t been dragged through all the obstacles with these giant, misshapen scars to show the proof of my reality?

I wish I could say that the condition has gotten better, and maybe it has — I suppose that depends on the perspective of “better”. I suppose “different” is a better word.

The first 10 years were simply unbearable. It came with the weight of accepting a(nother) life-long incurable diagnosis that would wreak havoc on my quality of life. It ripped away my ability to experience adolescence in any sort of normal capacity. High school memories still haunt me — hiding in stalls with excruciating pain, and unattractive noises and odors coming from my stall while a clique of popular girls stood outside the stalls, laughing and talking about boys. And the silences that followed when I was unable to hold my bowels any longer while I tried waiting for them to leave. The snickering, the whispering, the shadow of someone leaning down to see the shoes of the person that was hiding behind the stall walls. A peek through the crack of the door. More whispering. And I just silently waited, holding my breath, waiting for the cramping to pass, sweating and trembling in discomfort while my guts threatened to steal all my pride. Which they did. Utterly humiliating. Soul crushing.

Another ‘fond’ memory of mine — Class announcements. Every day during homeroom, the teacher would select a classmate to read the morning announcements put together by the principal and emailed to each teacher. To be honest, the moment itself is foggy. I don’t remember who read the announcement, but I believe they kept that one sentence to themselves — the one about me and how all my teachers should excuse me from class if I need to walk out due to the urgent nature of my bowel habits that I couldn’t control. This was likely intended to be a private message to the teachers, however there it was, blended into the morning announcements that classmates read to each homeroom class. Who knows if it was read out loud in other classrooms. Who knows how many students saw that like I did, who laughed about it with their friends, and continued whispering behind my back. It’s not like they didn’t notice — every test we took was a nightmare. Forty-five minutes of dead silence in the class with only the sounds of pencils scribbling on paper, and the sound of my gut churning loudly. You can’t mistake that sound… And I wanted to disappear every time another loud, wet gurgle announced my chronic diarrhea issue with the class.

While other girls were hanging with their friends and talking about their crushes, I was getting closer and closer with my bathroom floor and heating pads. I finally got to experience my first relationship. But it wasn’t as exciting as it was terrifying, leaving me with crippling anxiety anytime a social occasion came up. I couldn’t just “go hang out” without having to worry about how I would manage my symptoms while I was away from the house. I would stall as long as possible to be intentionally late, so I would have to fight through less hours of discomfort.

When intimacy came into the picture, it was not your normal experience. Somehow, I had one of the more ‘popular’ guys in my class interested in me, and I still don’t know how that happened or if it was even real. Was this a monetary bet to date me? Sadly, this person had dated another person before me which I later found out was a bet, and it’s made me wonder ever since if I was another unfortunate girl who believed they were adored when they weren’t. I don’t know if that’s the case, and it probably isn’t, but the question was always in my mind.

Either way, the pressure was there. I dealt with criticism and judgement my entire grade school life. I was told to my face I was voted “smallest boobs” and asked if my boyfriend was nominated for Homecoming King, who would be his Queen? It couldn’t possibly be me, his girlfriend. No one would ever expect to see me, let alone choose me to be Homecoming Queen! What a thing to tell someone. And of course I wasn’t the Queen, naturally. I was okay with that. I believe I showed up to Homecoming in black skinny pants and a black top. I don’t do dresses, I don’t look like the pretty girls, and barely anyone outside my direct class knew who I was — I wasn’t Homecoming Queen material. I didn’t need all eyes on me walking down the staircase, with whispers or snickers about ME of all people being chosen. I didn’t want to be an embarrassment to my boyfriend. No thank you. Let the deserving popular girl win, the one everyone felt was better paired as a girlfriend for my partner. The girl he eventually slept with only a couple weeks after our breakup a year later.

So I had to be more, I didn’t want to be a failure, or to have more rumors spread about me, or to be disliked by any of my boyfriend’s friends. I tried to be social, but I didn’t know how to talk to people, and I didn’t have the confidence to begin with so it was difficult for me to fake. So I was quiet… I didn’t communicate well, I just went along with things to keep my boyfriend from feeling let down or having to make excuses for me to his friends. I did what I could to keep him happy, when I was physically able.

There were too many times to count where I wasn’t physically able, though. There was a stretch of time when I became so sick I had to have a PICC line so I could be attached to an IV to feed though antibiotics and nutritional formula for hours at a time because my intestines were so badly damaged, I couldn’t absorb nutrients. So I had to walk around with my pump’s motor making noise from the backpack it was hiding in. My sister would carry the weight when we walked through town one night so we could get out of the house. I remember being mocked by someone at the gas station we went into when they saw me hooked up to tubes that led into a backpack being carried by my sister — as if she was walking me on a ‘leash’ like a dog. She stood up for me like she always does, but the comments were still made, and they still left an impression, clearly, as the memory always stands out in my mind over 15 years later.

During this time, I would still hook up to my IV each night and then would drive to my boyfriend’s house while it was running. We sat up in his room with the pump running in the background like a white noise. But then he asked (begged) me for sex. It wasn’t the first time for us, but it was still new. I was still insecure, and even more so while I was now so sick, skin and bones, attached to a backpack, always getting tangled in the long IV tubes. I wasn’t comfortable with it, I felt embarrassed and vulnerable, I didn’t want to be intimate like this. But he did, and he kept pressing it. He showed me how we could do it without getting tangled by physically pulling me on top and excitedly saying “See??”. So, I did, and I hated every second of it. I got through it, and I felt like a good girlfriend. But more than anything, I felt like damaged goods, unattractive, limited. I felt used.

Life carried on. I watched my sister go to college and experience dorm life. The thought of me living in a dorm was impossible to imagine. It wouldn’t work, even though I dreamed of getting to experience that life. I instead suffered getting through a single night visiting her because she had a shared bathroom with stalls — just like in High School. No privacy, constant interruptions, and me sitting and hiding out waiting for the bathroom to be empty while I held in tears from the discomfort from trying to hold out, and eventually failing.

The long drive to and from her dorm was always it’s own miserable journey, watching exits come and go wondering if I can keep going, if I can make it to the next. It always consisted of the same bathroom stops — most often an outdoor mall with a bathroom tucked away down a long hall between stores. It was the longest row of stalls I’d seen, so I could find one without people on either side. It beat going to a single-person gas station bathroom where there was always someone pulling on the door handle, standing directly outside waiting and listening. There’s no avoiding or hiding in that situation. You have to walk past them and leave them to enter the room with the air thick with the smell of insides decaying. How lovely.

Every job I had was a similar experience. One shared bathroom. Constantly needing to escape and leaving the other employees to handle customer lines or floods of phone calls with a built-up queue while I disappeared for 10-20 minutes to use the bathroom. The dagger eyes that fell on me every time I slithered back to my desk in shame and embarrassment hoping others wouldn’t notice, but they always did when it was that busy.

The only thing that could offer partial relief was my narcotics. I would take a pill and watch the clock, hunched over at my desk, holding back tears while my gut churned and roared in anger. People were watching, they were aware I had just come back from a 15-minute disappearance, and I couldn’t stand up and disappear a second time with 9 calls holding in the queue and only 2 others on the phones. I held my breath through the pain and forced myself to function for a few more minutes. The clock always moved so slow. Fifteen more minutes. I continuously talked myself through the hour it took for the meds to start kicking in. Slowly… almost there… I finally would begin to feel some relief. Eventually the urgency eases up. From there, I would avoid eating. A single bite of food or sip of a drink could wake my bowels and start the cycle all over again. Hunger became normal for me. Starving myself was, and still is to this day, the only thing that helps me avoid symptoms interrupting my day.

Narcotics don’t come so easily anymore, and typically are only prescribed after a major surgery and they don’t last long because surgery recoveries come with additional daily pain that drugs could never fully treat.

It’s quite unfair really — I was always judged, even by my own father who made comments about my narcotic use like I was some failure drug addict. And I felt ashamed because yes, every pill was like gold to me. It was a ticket to a day of relief and prevention from the embarrassing predicaments I found myself in every day I had to face the public. The doctors never want to prescribe because they don’t want to risk addiction. Guess who did want to risk it? Yeah, the one that couldn’t walk upright without them because she was permanently hunched over in pain. The starving girl that couldn’t eat because she knew she would be stuck in the bathroom for the rest of the day. The one that had zero quality of life and thought frequently about the relief that her death would provide. The pain medication would give me life back — would temporarily numb the pain, as if I had no guts at all. What a glorious little break in reality. I would feel light, and because of that, my energy increased. I was happier, functioning, laughing again. Fuck, let me get addicted. Let me function again. Let me live a day without pain and shame. But that’s not an option.

By the time I was in my young twenties, I would think about quitting my job daily. I couldn’t manage the symptoms, the interruptions, the pain, the humiliating experiences almost every day. My lunch breaks consisted of me driving to grocery stores or gas stations where I would sit in the bathroom for 20 minutes. Five minutes to drive there and five minutes back. Depending on if I had an embarrassing encounter in the bathroom, I may or may not be brave enough to stop and face the cashier and other customers to buy a drink or something to nibble on. Usually I kept my head down and bolted to the door. Then my 30 minute break was up, whether I was ready or not. I knew I had 4-5 more hours of my shift to get through, and if that bathroom run wasn’t successful — and it often wasn’t — I would be suffering every minute the rest of the shift, likely worse than the first half.

When I finally got an apartment with my friend, I was lucky she was willing to provide me the room with the attached bathroom. My little hiding space, the first place I would run to when I walked in the door from work. I could finally feel relief for the last few hours of my day before I had to face the same reality the next day at work. There was more than one occasion I didn’t make it home in time. Both of the times, I was grateful my friend was not home to witness the walk of shame, hobbling up the stairs holding my pant legs tight against me to avoid any leaking. I didn’t make it. It would have been obvious for anyone to know what was going on.

When I finally moved into my own apartment, the freedom of having my own space and my own bathroom was the greatest thing I’d experienced. I spent hours in that bathroom every night, against my will. I even completed half my online schooling from the toilet — I had no choice but to do my timed online tests from there, knowing the interruption would exist. Laptop on my lap, a puke bucket beside me, and my legs going numb from sitting too long. But I got through it. I was so proud of myself back then.

Eventually the depression got bad enough that I recall late nights in bed, not sleeping, but watching the snow fall outside my window while I was writing away about my misery. Convincing myself to keep going. Keep living. I was ready to die, I was ready to be free of everything. I didn’t feel I could do it anymore. But I stayed. And I got to meet Ripley, who really did save me during that rough period. She gave me a reason to stay, to function, to get outside for a walk when I wouldn’t leave my bed otherwise, even if I did have to walk hunched over and worry about throwing up in the grass outside the apartment windows. When I was physically capable of leaving the house a couple of hours, I did a lot of thinking during our solo hikes in the woods. I worked out my mental battles and learned to discover new ways to find joy. I miss those days of both of us running free through the wooded trails, discovering this chapter in our life.

The months prior to finding Ripley were the lowest points for me until 2023. Ripley had been my rock, my comfort, my reason to live for 11 years. She made me laugh daily, she made me feel loved daily. Loved unconditionally, which I’d never felt in my life. And I loved her unconditionally, something I struggle with in my human relationships. We’d been through surgeries together, we both received several new surgery scars to show the battles we fought. We shared medications. We shared emotions. When she was happy, I was happy. But in 2023, I experienced the reality that she would not be glued to my side much longer. The dog that I loved like a daughter, the closest thing I’d ever have to a daughter, was old and declining. And my mental health declined as I watched the life slowly slip away from her. And when she was gone, a huge part of me was gone too. I was, and am, no longer whole. The one I always leaned on to cry into was not there anymore, and I felt like it was impossible to breath. Her contagious energy wasn’t there to lift my spirits. And that was the beginning of the longest and most severe depression I’ve known, a new rock bottom when I thought I’d already been there.

Now I’m navigating without her again. Two years later and I’m still grieving. My mental health has threatened to kill me so many times. Times when it becomes hard to breathe, to exist in my mind for another minute. “I want to die I want to die I want to die, please let me stop thinking, let me stop feeling, please let me be numb!” It plays on repeat as I hyperventilate, claw at my skin, pull at my hair, and cry out all my pent up and stuffed away emotions while locked away in a bathroom or closet to save the others from my sad, negative energy flooding the room. There’s nothing that numbs me enough. Eventually I need to collect myself and get up and carry on. Death is not an option right now.

Crohn’s is still largely impacting my life. I currently experience pain every day. The humiliating experiences have lessened now that I work from home, and I hope I can continue this isolated life for the sake of my illness and my mental health, even though it’s lonely. However, I now face the looming threat of needing a permanent ostomy bag if I require another surgery. And my disease is far from remission. The daily pain continues, as does the starving, the limitations, the fear of travel, the fear of sharing a bathroom with anyone, and the anxieties of being away from home. I have tried and failed all available treatments. My doctors don’t have any other solutions for me at this time. And I have no pain management. Things are looking a little bleak right now.

The fear that kills me the most is that of my future, and more so, of my partner Travis’s future. What will the next ten years look like as my body deteriorates? My wrists have already worn out and failed me. My intestines, or what’s left of them, are still ulcerated, inflamed, and bleeding. I require frequent help and will only become more dependent in the future. My mental health has discovered new lows I didn’t know existed, and my desire to be alive has mostly left me. After dealing with depression and thoughts of death since I was in the 2nd grade, I’m now in the longest episode of severe depression, going on 2 years now…

I once felt like each day was a gift. Every hike was an accomplishment. I lived for the days I could function enough to do something fun, because that made my life still worth living. The good once outweighed the bad, and I would always find the silver lining in the challenges I faced. I focused on the bright side. But I no longer find that the moments of joy outweigh the challenges I face. My brain does not function like it used to, my mind is foggy, and I’ve lost resilience. I no longer feel ready to fight back against my body, to come out on top. I’ve stopped caring about the things that made me feel worthy. The unfairness of being chronically ill has created so much anger and resentment, in addition to the extreme fear of my future. My fear of Travis’s future. I know that my limitations and negative mindset can be draining to others, and I don’t even know how to help myself, let alone protect those around me. I don’t know how to want to live again.

So I go through the motions of each day. Working the job that has taken it’s own toll on my mental health and feelings of worthiness. Keeping up with the house we can barely afford. The financial hits, the medical bills, the mundane parts of life, everything wears me down. I have been isolating for a while now. I tend to do that when I want people to adjust to my lack of presence, should one day I leave the world prematurely — the grief won’t be so hard to manage. But I have family to consider. I can’t pass along my lifelong pain and suffering to others. I need to be here to take care of my parents when they need me, even though I don’t know if I’ll be able to provide them with what they need, even though I know those years will destroy what’s left of me. I honestly don’t know if I’ll be able to survive this future chapter of my life.

It’s hard to look ahead and feel that good things are coming, when I know much, much darker times are still ahead. If I’m already this close to checking out, what will that look like for me? How will I keep my relationship stable and happy? It’s already such a struggle. I wish that I could guarantee a happy future for Travis — a love that he deserves, and partner that can meet him halfway, someone that lifts him up and pushes him forward instead of slowly dragging him under the water with me while I drown. While I’ll never be free, I don’t want the same prison sentence for him. I wish he would understand fully what the next 15 years could look like, before it’s too late for him to choose a new and better path.

I will continue to fight though for now. I will also continue to watch my other friends and family succeed at life — doing things that I cannot — experiencing a happiness I’m not familiar with, and wishing I could be there with them experiencing the same feelings. I hope that someday soon I can remember what it’s like to want to live to see the next day, to want to live to meet all those that will come into my life in some impactful way. If I can ever break free from this house, I hope to escape back home to spend some time with my family, and revisit the trails that Ripley and I used to hike every weekend. To create a new life in a place that holds so many different memories, both good and bad. I hope I can learn to appreciate the beauty that life can offer, that can propel me forward into the future with a flicker of hope.