Ten Years Later

This week, I celebrated the ten year anniversary of my endometriosis surgery and subsequent diagnosis. The day I was officially labeled as “not crazy” and entered into a completely new chapter of my life. It’s hard to believe it’s been ten years. I genuinely have no idea where the time has gone.

For so long before that surgery, I was fighting to be believed. Fighting doctors. Fighting my own body. Fighting the quiet voice in the back of my head that wondered if maybe everyone else was right and I was exaggerating. That operating room gave me more than a diagnosis. It gave me validation. It gave me proof. It gave me permission to trust myself again.

Endometriosis has taken a lot from me. It has taken days, weeks, entire seasons of my life. It has taken energy I will never get back. It has taken a version of girlhood that felt carefree and simple. But it has also made me into the person I am today.

Someone who knows how to advocate for herself and for others. Someone who has quite literally made a career out of it. Someone who does not care what others think because she has already survived being doubted at her most vulnerable. Someone who is confident. Someone who knows what really matters in life because she learned early on how fast your life can change. Someone who surrounds herself with good people because she understands how precious time is. Someone with unwavering determination and ambition because she has had to fight for everything. Someone who is kind because she knows better than anyone that people can be fighting battles silently. Someone who others can look to when they have just been diagnosed and feel like their world is ending. The list really does go on and on.

I am so proud of the person I am today. And I hate to say it, but I truly do not think I would be this version of myself without all the adversity I have faced. Ten years ago, I remember thinking that if I was going to have to live with this, it had to mean something. I wanted to turn my pain into purpose. I didn't know how yet. I didn't know what that would look like. But I knew I could not let it be for nothing. I am proud to say I have done just that.

I worked with my doctors and my boss to write and file legislation that eliminates the primary care referral requirement for specialty gynecological care so others do not have to fight as hard as I did to be heard. I took the worst moments of my life and turned them into policy. Into change. Into something tangible that could make the path a little smoother for the next person sitting in an exam room begging someone to listen.

Every single day in my job, I use the skills that were sharpened by my pain. I advocate for people in their most vulnerable and hardest moments. People navigating housing crises. People dealing with healthcare systems that feel impossible. People who are exhausted and scared and just want someone to pick up the phone and fight for them. I know how that feels. I know what it is like to feel small in a system that is supposed to help you. And I refuse to let people feel alone if I can help it. And I am just getting started.

In the last ten years, I have graduated high school. I graduated college. I am now just months away from graduating with my master’s degree. Somehow, I have thrived academically every step of the way. I think part of it has been distraction. School gave me structure. It gave me something to focus on when my body felt out of control. It reminded me that my brain still worked even when my body felt like it was failing me.

I completed internships. I nannied. I worked in offices on my college campus. I led many clubs. I said yes to opportunities even when I was tired. All of it led me to the full time job I have today. A job that is challenging and exhausting and demanding. A job that I love. A job that constantly reminds me that everyone is carrying something.

Sometimes I look back at fourteen year old me, sitting in therapy for depression because it felt like no one believed her pain, and I wish I could hug her. She could not imagine a future. She could not imagine feeling strong. She definitely could not imagine a future this bright. She thought her life was over before it had even begun. If only she could see me now.

I still struggle every single day. Every single day is a battle to get out of bed. Chronic illness does not disappear just because you have grown around it. The pain still shows up. The fatigue still lingers. The frustration still creeps in. But I have tools now. I have coping skills. I have perspective. I know what my body is capable of surviving. I know that I can do hard things.

The last ten years have not been easy. They have been messy and painful and complicated. But they have also been filled with growth, purpose, and resilience I never knew I had.

I cannot wait to see what the next ten years will bring. I hope for less pain and fewer medical battles. I hope for more advocacy, more impact, more moments where someone feels heard because I spoke up. Most of all, I hope I continue to honor that girl who just wanted to be believed.

Ten years ago, I was fighting for a diagnosis. Today, I am living proof that you can fight, survive, and still build a life you are proud of.

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The Feelings No One Talks About in Chronic Illness

Those who know me know that I am not an emotional person, and I do not like talking about emotions. But I would be lying if I said that was not an important aspect of living with chronic illness. Chronic illness hardens you. It creates a solid shell that no one can break through. It is not a choice. It is an involuntary defense mechanism.

When you live in a body that constantly surprises you, disappoints you, or scares you, you learn very quickly how to protect yourself. You cannot afford to fall apart every time something new goes wrong. You cannot afford to spiral every time your symptoms flare. So you build armor. You become practical. You focus on logistics. You handle appointments, medications, insurance battles, and procedures. You become efficient at survival. But under that shell, there is still an emotional cycle that happens almost every single time a flare hits.

For me, a flare can look like my heart acting up. Arrhythmias that remind me that my body does not always follow the rules. It can look like chronic neurological chest pain that feels alarming, even when I know it is not an emergency. It can look like endometriosis pain that brings me back to being fourteen and doubled over. It can even trigger the lingering fear that comes with having survived a pulmonary embolism, where every chest sensation feels like imminent doom. Whatever form it takes, the feeling underneath is usually the same.

First comes denial. Maybe I am just tired. Maybe I did not sleep well. Maybe it is stress. Maybe I can push through this meeting, this event, this class. I try to negotiate with my body like it is a misbehaving child. If I drink more water, if I rest for twenty minutes, if I ignore it, maybe it will go away. Most of the time it does not.

Then comes frustration. This is the stage where I get angry. I have plans. I have goals. I have responsibilities. I have a life that does not pause just because my body decided to act up. It feels unfair to have to rearrange everything because of something I did not choose and cannot control. It feels unfair to cancel. It feels unfair to slow down. It feels unfair to once again explain to someone why I cannot do something that looks so simple from the outside.

Frustration is intense. It simmers under the surface. It makes me short with people I love. It makes me want to throw my phone across the room when I get another appointment reminder. It makes me question why my body cannot just cooperate.

After frustration, guilt creeps in. Guilt for canceling plans. Guilt for needing help. Guilt for not being as productive as I think I should be. Guilt for being the friend who has limitations. Guilt for being the daughter who worries her parents. Guilt for being the employee who might need flexibility. Even when no one is making me feel guilty, I manage to do it to myself.

Chronic illness teaches you to measure your worth by what you can still accomplish. On good days, I can do almost everything. On flare days, my world shrinks. And when it shrinks, I sometimes feel like I am shrinking with it. And it feels like I've been stuck in a continuous flair for years now.

Then comes grief. This is the part I do not talk about often. Grief for the version of me who did not have to think twice about her heart. Grief for the version of me who did not have to calculate energy before making plans. Grief for the ease with which other people seem to move through life. Grief for the body I thought I would have.

Grief is quieter than frustration. It is heavier. It shows up late at night when everything is still. It shows up when I realize this is not a phase. This is my life. It does not mean my life is bad. It just means it is different than the average twenty-something.

But the cycle does not end there. Eventually, acceptance makes its way back in. Acceptance doesn't mean I like it. It doesn't mean I am okay with every symptom or every setback. It means I adjust. I reschedule. I rest. I take my medications. I follow up with my doctors. I do what needs to be done. I remind myself that I have handled this before, and I can handle it again.

And somewhere in that acceptance, hope quietly returns. Hope that this flare will calm down. Hope that treatments will improve. Hope that research will advance. Hope that I can still build a life I love within the limits I have. Hope that even on days when my body feels unreliable, I am still capable, still worthy, still strong.

Chronic illness hardens you, yes. It builds that protective shell because it has to. But it also deepens you. It forces you to confront fear, anger, and sadness in ways most people do not have to at a young age. It forces you to become resilient, not because you want to be inspirational, but because you want to survive.

I am not an emotional person in the traditional sense. I do not cry easily. I do not always process things out loud. But I feel the cycle every time my health shifts. Denial. Frustration. Guilt. Grief. Acceptance. Hope. Over and over again.

If you are living with chronic illness and you recognize yourself in that pattern, I want you to know that nothing about it makes you weak. Feeling frustrated does not make you ungrateful. Feeling grief does not mean you have given up. Feeling guilt does not mean you are actually a burden. It means you are human.

There is nothing simple about living in a body that requires constant monitoring and management. There is nothing dramatic about being tired of fighting. There is nothing selfish about wanting ease. The emotional cycle of a flare does not mean you are failing. It means you are navigating something hard.

And even if you build a shell like I did, even if you pride yourself on being practical and composed, it is okay to admit that this life comes with feelings. You are allowed to name them. You are allowed to sit with them. And you are allowed to hope anyway. 

I am reminding myself of this every single day, and if I am honest, it never seems to get any easier. But that does not mean it is not worth repeating. Give yourself grace. You are managing something so few people truly understand.

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What I Wish I Knew When I Was First Diagnosed

Receiving a diagnosis can be full of complicated emotions. Relief from having your symptoms validated. Fear of what your life will look like going forward. Sadness for the past version of yourself that was symptom-free. Receiving a diagnosis with no cure amplifies those emotions even more.

Mainly, I felt relief when I was diagnosed with endometriosis at fourteen years old. My pain had been questioned over and over again, and now I finally had an answer. While I knew I was in for a lifetime of chronic pain, I didn’t understand the gravity of the disease. Back then, endometriosis hadn’t been identified as a full-body disease yet (at least to my knowledge). I didn’t know the damage inflammation can do to your body, and I never expected all the additional medical conditions that would arise because of it. If I could sit next to that version of myself now, here’s what I would tell her.

You’re not crazy, and your pain is real. Becoming a teenager is hard enough. Now add on mysterious chronic pain and a medical system that’s actively working against you (but you don’t know that yet). I saw seven or eight different specialists trying to get a diagnosis for my chronic, excruciating pelvic pain. Each told me something similar. You’re being dramatic. You’re perfectly healthy. Teenagers can’t have endometriosis. You’re lying. The damage that does to your psyche is still something I’m dealing with to this day. Validation matters more than you realize, and believing in yourself is the first step to receiving that validation. Even when others questioned me, I knew something was wrong. My parents knew something was wrong. Everyone who knew me knew something was wrong because I was a shell of the person I used to be. I couldn’t get out of bed. I couldn’t stand to wear anything but sweats. I stopped doing my hair and makeup (something I always loved). I was mean and irritable because of the pain and had no way of getting relief. But I still had a sliver of hope that this wouldn’t be my life forever. And that hope motivated me to keep advocating for myself until I got the answer I needed.

However, relief doesn’t mean it’s over. Surgery or treatment isn’t always a cure. I knew surgery wouldn’t be in the case of endometriosis, but my pain was so much better afterward, and I was starting to feel like myself again. If I kept up with my treatment plan, I thought that would be the end of it. I was wrong. No one told me how much a chronic inflammatory condition can wreak havoc on your body. Probably because it’s not widely known information. I’ll admit it’s hard for me to remember that time in my life because of the trauma. I have very few memories from my freshman year of high school, but I do remember the complicated emotions that came with not immediately feeling better. And it’s okay to feel all of those emotions.

Another thing I didn’t expect was the fatigue. Fatigue is more than just being tired, and that’s one of the many things that’s hard for others to understand. Yes, everyone gets tired. This is an exhausting world. But the weight of chronic fatigue is something else entirely. You can see last week’s blog post for more on that, but it’s certainly a debilitating weight added on top of other chronic symptoms and pain that makes everyday tasks feel nearly impossible. It definitely wasn’t something I was prepared for, but it seems to be very common in the chronic illness community.

This is your reminder to advocate early and advocate often. Don’t forget that doctors work for you, and it’s well within your right to push them, ask for tests or scans, and make sure they are looking into all possible options — especially with invisible symptoms or pain. Go to your appointments with a list of questions. Track your symptoms whenever possible so you have real data to bring to your doctor. You deserve proper and efficient care, and unfortunately that’s something women and people of color often have to fight for in this country. While the system is broken and needs to be restructured, use these tools to best equip yourself to get the medical attention you deserve.

Chronic illness will affect more than just your body. It will affect your relationships, mental health, identity, and self-confidence. Not always in bad ways. I personally think it’s made me more confident and has shaped my identity by allowing me to turn pain into purpose. It also affects your resilience. The more hurdles life throws at me, the more resilient I become, and I’m actually thankful to chronic illness for that. Since chronic illness deeply affects your relationships, your community and chosen family matter so much. Assemble a support system you know has your back no matter what. People who understand you have limitations and know that doesn’t mean you love them any less. It just means sometimes listening to your body has to come first. Those who truly love you will understand that.

I’ve had my fair share of comorbidities over the years, from heart arrhythmias to bladder issues to sleep issues to neurological issues. While endometriosis is probably the root cause of all of these, I think I’ve only survived them up to this point because I was diagnosed so young and learned how to live with chronic illness and pain (for better or worse). I definitely get upset and angry at my body more often than I’d like. I mean, I’ve asked for a new heart for my last several Christmases and birthdays. It’s not fair to have to live like this, but it’s the card I’ve been dealt for whatever reason. It’s valid to be upset. But I like to turn that anger into power and use it to propel my life forward in spite of my illnesses. I continue to go after my dreams because I’m allowed to dream even though I’m sick. Endometriosis is part of my story and something I’ll carry with me for the rest of my life, but it’s not my whole story.

I recently had an old friend reach out because she and her doctors think she might have endometriosis. She asked me a bunch of questions, and I gave her the rundown of my experience. Then she asked if there was anything else she should know, which got me thinking — what did I wish I knew before I started down this life-changing path? Well, I told her everything above.

You are not broken.
You are not dramatic.
You are not weak.

You are learning how to live in a body that requires special care, and that makes you stronger in so many ways. You are dealing with things no one will ever see or fully understand. Give yourself grace.

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My Sleep Apnea Journey

I can’t remember a time when I haven’t been exhausted. No matter how many hours I sleep, I always wake up tired. I toss and turn all night. I’m miserable if I don’t get at least eight hours of sleep. I put a lot of pressure on sleeping in on the weekends because that’s my time to catch up on rest, and it makes me incredibly anxious when I can’t do that. I’m up using the bathroom three to five times a night. For a long time, I accepted that as my norm, even though it’s completely unsustainable. I told myself that’s just how my body works, and there’s nothing I can do to change it. Chronic fatigue is a byproduct of chronic illness, and I think it’s something I’ll always experience. Having a disease that has no cure, my body is constantly fighting itself, and my nervous system is stuck in fight-or-flight.

Once I got my Oura ring in May, I realized there might be something else going on. It kept telling me my breathing regularity during sleep wasn’t good, and it also showed that I was getting very little deep sleep and not enough REM sleep, so my body was never really able to recover from the day before. I also frequently get alerts saying that my heart rate is too high at night for my body to go into recovery mode, despite having my heart rate suppressed by several medications. That comment was extremely eye-opening to me. I offhandedly mentioned it to my cardiology team, and they very matter-of-factly said I probably have sleep apnea because it’s very common in patients with atrial fibrillation like me. Of course, I had heard of sleep apnea, but it’s not something I ever considered because I’ve never been a snorer (at least, I didn’t used to be). They referred me to a sleep doctor, and I started to get very excited about the possibility of finally feeling rested. Around the same time, one of my close friends was diagnosed with pretty severe sleep apnea. We got to talking, and I realized I had many of the same symptoms.

Before I even saw the sleep doctor, I did an at-home sleep test. I was given a kit with equipment to strap around my body that monitored things like my breathing and heart rate to determine whether I was having apneas during the night. The equipment wasn’t as uncomfortable as I expected, but it definitely wasn’t an ideal way to sleep. A few days after I returned it, I got my results. They provide this actually pretty cool report that not only tells you how many apneas you had during the night, but also how long you slept on your back, side, or stomach, your heart rate and its spikes, and how many times you snored. The results diagnosed me with mild obstructive sleep apnea.

After my diagnosis, I met with a sleep doctor. What is nice about sleep apnea is that there’s a problem, but there’s also a clear and widely used treatment path. Or so I thought. Even though I only have mild sleep apnea, I have severe exhaustion, so CPAP therapy is the route my doctor wanted to take. This appointment was at the beginning of September, and I was so excited thinking I could have a CPAP machine within a few days and finally start getting some sleep. That excitement didn’t last long. My doctor changed her tune pretty quickly when she realized I have atrial fibrillation.

Because of my atrial fibrillation, she said I had to spend the night in a sleep lab at the hospital so someone could manually titrate the CPAP and make sure any heart episodes wouldn’t interfere. Okay, that’s fine, I thought. Then she told me it would be months before I could get an appointment. That news made me really upset because I went into the appointment assuming I’d have a CPAP machine within the week.

After months of waiting, it was finally time for my night in the sleep lab during the first week of January. I was counting down the days until I got a call the day before New Year’s Eve, telling me my insurance had denied the visit and wanted me to do an at-home automatic CPAP titration instead. Apparently, no one had explained to them why that wasn’t possible for me, and my doctor was out for the holiday, so she couldn’t write an appeal in time. I had to give up my appointment. Why this only went through insurance four days before my appointment, during a holiday week, I’ll never know. I had already been waiting five months, and I was crushed. I was then told it would be another four months before I could get a new appointment.

It turned out I was able to get an appointment in February, and my doctor sent in an excellent appeal letter, which gave me some hope. But once again, the appeal was denied, and now I have to move forward with at-home automatic CPAP titration, not knowing if it will actually work with my body. Don’t get me wrong, I’m very glad I don’t have to spend a night in the hospital connected to a million wires, probably not getting much sleep. But this could have happened back in September.

In the months I’ve spent waiting for this in-lab CPAP titration, my symptoms have gotten so much worse. I experience terrible night sweats that even having the window open when it’s below zero outside can’t help. I start and end my day with splitting headaches, and sometimes I even wake up in the night with them. I’m more exhausted than ever. It’s affected my mental state, too. Sleep is always at the top of my mind. I’ve missed out on social gatherings. I feel extreme anxiety when I know I’m not getting enough sleep. I’m at the point of desperation for good sleep. When your body is constantly fighting itself, you need sleep to recover. I’m not getting that. I’m already miserable being in pain all day; I don’t need exhaustion on top of it.

Because of the strong connection between atrial fibrillation and sleep apnea, I can’t help but wonder what came first. It feels like a chicken-and-egg situation I’ll probably never have an answer to. Despite the long road it took to get here, I’m grateful to have access to the resources needed to treat this condition and, hopefully, improve my arrhythmias in the process.

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How I Decompress After a Long Week

It seems like everyone I’ve talked to agrees that this has felt like a very long week. I know it has for me. There were some really exciting work things happening this week, the kind of opportunities you’re grateful for but that also demand a lot of you. That meant late nights editing, rewriting, rereading, and making sure everything was exactly how it needed to be. I don’t regret any of it for a second, but as we head into the weekend, I’m absolutely drained. I’m feeling especially grateful for my Friday work-from-home day this week because I don’t think I would’ve made it otherwise.

Living with chronic illness means I’m usually tired by the end of the week, no matter how “easy” or “hard” the week looks from the outside. But this week was a different level of draining. On top of work, I also started school again, and the homework is already piling up. Perfect timing, right? Between work responsibilities, academic deadlines, and the constant baseline of managing my health, it felt like the week just kept going and going. So, in honor of finally reaching the end of this seemingly never-ending stretch of days, I thought I’d share how I decompress after a long week and what helps me reset, even just a little bit.

My weekly decompression usually begins on Thursdays after work when I get together with my coworkers to talk through the week and lean on each other for support. I know to other people it probably looks like just after-work drinks or casual hanging out, but for me, it’s an essential part of my routine. I have a very unique job, and you can only truly understand it if you’ve lived it. In that way, it reminds me a lot of chronic illness. There are certain experiences you just can’t fully explain unless someone has been there too. Being able to hash out frustrations, celebrate wins, and vent without having to over-explain myself makes a huge difference. I always feel lighter walking into the weekend after that time together.

Fridays are a gift in their own way because I work from home. That means I get to sleep in two hours later than usual, which honestly feels luxurious at this point in my life. By the end of the week, that extra sleep isn’t just nice, it’s necessary. When my alarm goes off, I try to ease into the morning, something I don’t have the luxury of doing Monday through Thursday when I sleep until the last possible second. On Fridays, I’ll check my work emails, make breakfast, and usually stay in bed working for as long as I can. Now that school has started again, I try to squeeze in some homework between work tasks so it doesn’t all spill over into the weekend. It’s not always easy, but future me is always thankful when I do.

Once I’ve wrapped up everything I need to get done for the day, it’s time to read. Reading is, without question, my favorite way to decompress. I read every night before bed and as much as I can during the day. Having a stressful job and living in a body that constantly feels like it’s in survival mode makes escape feel necessary. Reading gives me that escape. It lets my mind rest somewhere else for a while. It’s also one of my favorite pain management strategies because it gives my brain something to focus on besides how my body feels. Even a short reading session can make a tough day feel more manageable.

I will say that Fridays are usually my appointment days. It’s rare that I don’t have some sort of medical appointment scheduled at the end of the week, so having a Friday with nothing on the calendar feels like a small miracle. Today, I don’t have one, and the relief that comes with that is bigger than I can explain. It means I can actually focus on resting instead of bracing myself for yet another doctor’s office.

After work is done, I usually spend some time just laying in bed until I have to get ready for whatever I have planned. Tonight, for example, I’m going to a birthday party, and I’m really hoping to squeeze in a nap beforehand to recharge a bit. Laying down never fails to help, even if I don’t fully fall asleep. Sometimes just giving my body permission to stop is enough.

For the rest of the weekend, I try to strike a balance between taking it easy and spending time with people I love. I truly cherish weekends with no obligations at all, though. Because I’m so go-go-go during the week, my body needs at least some dedicated recovery time. Sleeping in is always the goal since I don’t get nearly enough sleep during the week, and if I can sneak in a daytime nap, I absolutely will. At this point, I take sleep wherever I can get it.

While many people use the weekend to let loose and go all out, those of us living with chronic illness don’t really have that option. We’ve had to learn how to rest with intention and how to balance social time with recovery in a way that’s sustainable. It’s not about missing out; it’s about surviving and showing up for the next week as best we can. Decompression isn’t a luxury for me, it’s a necessity, and honoring that is one of the ways I take care of myself and keep moving forward.

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Grad School & Chronic Illness/Pain

As I enter the final days before starting my last semester of graduate school, I can’t help but reflect on all the obstacles I’ve faced over the past two years. By the time I graduate in May, I will have undergone three heart surgeries, made multiple trips to the ER, survived a pulmonary embolism, received a sleep apnea diagnosis, and worked full time, all while completing this one program. That was never the path I imagined for myself back in the fall of 2024 when I started. When I applied earlier that spring, I felt relatively normal. My arrhythmias hadn’t yet returned with the intensity that would later upend my life.

Going to graduate school while working full time and living with chronic illness is the hardest thing I’ve ever done. I honestly don’t know how I’ve made it to this point. There have been countless tears and more moments than I’d like to admit where I wanted to quit, which is very unlike me. Last summer, I almost took a break because I couldn’t fathom having zero downtime to let my body heal. Instead, I reached out to my university’s disability center, advocated for myself, and asked for accommodations. That process wasn’t easy. Years of medical trauma had conditioned me to believe I wouldn’t be believed or taken seriously. But the gentleman I spoke with was incredibly supportive and provided more than enough accommodations to help me through my final semesters. I’m so glad I kept going because now I’m four, hopefully short, months away from my degree and never having to go to school again.

I often find myself daydreaming about what life will look like once I graduate. I will have had, and hopefully recovered from, my third heart surgery. I’ll hopefully have my sleep figured out. I’ll be able to move my body again and have the time and energy to cook nourishing meals for myself. I try not to cling to false hope, but after everything the past two years have put me through, that vision feels incredibly exciting.

The people around me are often baffled that I’ve made it this far. They tell me they would’ve given up a long time ago. While these heart conditions are relatively new for me, chronic illness and pain are not. I’ve spent the last decade learning how to live in a body that makes everyday life significantly harder. In high school, my parents rarely let me miss school because of pain because they didn’t want it to become a habit. At the time, I was furious. Now, I’m deeply grateful. That expectation instilled a resilience in me that I still carry today. That same intrinsic drive and ambition led me to graduate high school with distinction, college summa cum laude and top of my major, and now graduate school with a 4.0 GPA. I don’t share that to brag, but because I’m proud of myself for the millions of moments I had to overcome to get here.

From the outside, it probably looks like school comes easily to me. People see someone who doesn’t procrastinate and seems to stay on top of everything. What they don’t see is how much effort it takes just to complete a single assignment. I don’t procrastinate because I can’t afford to. I don’t know if tomorrow I’ll be bedridden or unable to function, so when I feel well enough, I work ahead, sometimes weeks in advance. I live my life one day at a time. Living in pain is not something anyone should have to endure. It destroys relationships, ambitions, and self-confidence. It has made me doubt myself more times than I can count. It makes even the simplest tasks feel impossible, and that’s not an exaggeration. But I refuse to let it win.

I’m not here to say that pain is mind over matter, because it’s not, and that narrative is deeply invalidating to those of us who live with chronic pain. What I am here to say is that we can do hard things despite our pain, and we deserve recognition for that. School is already hard enough without carrying a body that actively works against you. I think those of us with chronic illness develop an extra layer of ambition because without it, it would be far too easy to stay in bed forever, even though that rest is oftentimes necessary. It isn’t fair, and that reality still makes me angry. But this is the only life I get, and I refuse to let pain I didn’t choose or cause be the thing that stops me from becoming who I know I’m capable of being.

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Fear & The Psychological Symptoms Surrounding Chronic Illness

Have you ever gone to bed not knowing if you’d wake up in the morning? I have. Many times. That’s the reality of living with heart problems. It’s a terrifying existence that forces you to confront what actually matters in life.

There’s an interesting paradox to it all. Having these near-death experiences has pushed me to try to really live, to spend time with the people I love, and to try to live like a normal twenty-something. But doing exactly that is often what puts me into those terrifying episodes in the first place of my heart racing to 215+ beats per minute. So how do you live life to the fullest when a ticking time bomb follows you every step of the way?

We talk about heart conditions, and chronic illness more broadly, as if they are only about physical symptoms. And while those symptoms can be, and are, debilitating, what is discussed even less, which says a lot considering how under-discussed the physical side already is, are the psychological challenges that come with living in a body that feels unsafe.

With endometriosis, the psychological toll has mostly come from not being believed by medical professionals, feeling misunderstood by the people around me, and trying to come to terms with having a lifelong painful disease with no cure. These are things I’m still working through more than ten years after my diagnosis, and I don’t know if I’ll ever fully move past the medical trauma I experienced while trying to get answers. But the psychological challenges I face with my heart conditions are different, because I’ve never feared for my life due to my endometriosis.

Being in your early twenties and having to make every decision based on how your heart might react is exhausting. I can’t eat sugar or drink alcohol too close to bedtime or I’ll be up all night with a racing heart. I have to ask others to replace my water jug at work because I’m not supposed to lift heavy things. I walk slowly up hills and stairs to avoid triggering an arrhythmia. I can’t attend work events if I won’t have a seat. I do everything I can to get a seat on the train so I don’t pass out during my commute. The stress of that alone gets my heart racing in the mornings.

I wake up in the middle of the night thinking there’s an earthquake, only to realize it’s my own heart beating so fast that it’s shaking the entire bed. I go to sleep not knowing if I’ll wake up in the morning. That fear doesn’t get easier. If anything, it follows me into other parts of my body.

After two back-to-back heart surgeries and years of living in constant fear, I developed neurological chest pain called intercostal neuralgia. It is a condition involving the nerves between the ribs and causes excruciating chest pain. After my second heart surgery last February, I underwent every test imaginable and no cardiovascular cause was found. Instead, the conclusion was that this pain is a result of the ongoing trauma my body has endured. My neurologist believes it will subside once I recover from my upcoming third surgery, one that is meant to finally put my atrial fibrillation at bay and allow me to move forward from the trauma my heart conditions have caused over the past few years.

Medical conditions do not stop at textbook symptoms. They can leave lasting psychological scars. I wish I had advice to share on how to manage that part of it, but the truth is I’m still figuring it out myself and probably will be for some time, until I can start feeling safe in my own body again.

I know my loved ones are scared for me. I try to be strong for them, but I’m scared too. Not all the time, because this has become my reality, but often enough, especially when I’m alone with my thoughts. That’s why I try to keep my brain busy.

Still, with my third and hopefully final heart surgery scheduled for the coming months, I’m starting to see the light at the end of the tunnel. I won’t let myself fully celebrate just yet. I thought this would all be over back in November 2024. But this time feels different. And for now, that hope is enough.

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