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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