Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts

Friday, March 6, 2026

The Weight of Awareness: Ten Years with Endometriosis

 March has always carried a complicated mix of emotions for me.

On one hand, it marks Endometriosis Awareness Month, something I care deeply about and have devoted so much of my life to advocating for. On the other hand, this year especially, it marks ten years since my diagnosis. Ten years since surgery. Ten years since the moment someone finally looked at me and essentially said, you’re not crazy.

Ten years is a long time to live with something that most people have never even heard of.

For those of us living with endometriosis, March can feel heavy. Awareness months are meant to bring visibility to important causes, but when you are personally living with the condition you are advocating for, the experience is different. It’s not just posting infographics or sharing statistics. It’s reliving your own story over and over again. It’s remembering the years of unanswered questions, the appointments, the dismissals, the pain that people can't see, and the moments when you began to doubt your own body. And sometimes, if I’m being honest, it’s exhausting.

One of the hardest parts about endometriosis is that those of us who live with it are often the ones who have to advocate the hardest for it. We are the ones raising awareness. We are the ones educating others. We are the ones pushing for research, better care, and recognition of how serious this disease actually is. Because for a long time, no one else has and that responsibility can weigh heavy.

Not because we don’t care. Quite the opposite. Many of us advocate so fiercely because we care so deeply. Because we know firsthand what happens when this disease is misunderstood or dismissed. Because we know how long it can take to be diagnosed. Because we know what it feels like to sit in a doctor’s office and feel like your pain is being minimized or explained away. But advocating for something that you are also actively suffering from is a unique kind of emotional labor.

Living with endometriosis is already exhausting. It is a chronic, inflammatory, whole-body disease that impacts far more than just the reproductive system. It affects energy levels, mental health, relationships, work, and daily life in ways that are often invisible to the outside world.

Then on top of that, during March especially, many of us feel this quiet pressure to show up as advocates.

To share our stories.
To educate others.
To post about it.
To explain it again and again.

And while I’m proud to do that work, I would be lying if I said it doesn’t sometimes feel overwhelming.

There are moments when I wish we didn’t have to fight this hard just to be heard. Moments when I wish the burden of awareness didn’t fall so heavily on the people already living with the disease. Moments when I wish the medical system, research institutions, and broader public health community had invested in this condition decades ago.

Because if they had, maybe the millions of people living with endometriosis today wouldn’t have had to spend so many years searching for answers.

Still, despite the exhaustion, I keep coming back to the same truth: this work matters. Every conversation about endometriosis matters. Every time someone learns what the disease actually is, it matters. Every young person who reads a story and realizes their pain might have an explanation, that matters more than anything.

When I think about the person I was ten years ago, desperately trying to understand what was happening to my body, I think about how powerful it would have been to see someone openly talking about this disease. To know I wasn’t alone. To know that what I was experiencing had a name. That’s why so many of us keep speaking up.

Not because it’s easy.
Not because we aren’t tired.
But because we know how much silence has cost our community.

Advocacy has become such a central part of my life that sometimes I forget how unusual that is. Many people discover their purpose through careers or hobbies. Mine came through navigating a disease that I never asked for but that ultimately shaped the person I became.

Endometriosis has taken a lot from me over the years. There’s no denying that. But it has also given me something unexpected: a deep sense of purpose.

It taught me how to advocate for myself when no one else would.
It taught me how to listen to my body.
It taught me resilience, persistence, and empathy for others who are quietly carrying their own invisible battles.

And it connected me to a community of some of the strongest people I have ever met.

So while March can feel heavy, it is also a reminder of how far we have come, and how far we still have to go.

Ten years ago, I was just beginning to understand what endometriosis was and how it would shape my life. Today, I understand something else too: advocacy doesn’t always have to look loud or perfect. Sometimes advocacy is simply telling the truth about how hard this disease can be. Sometimes it’s admitting that we’re tired. Sometimes it’s giving ourselves permission to rest while knowing the work will continue.

Because this fight has never been about just one person. It’s about a community of millions of people who deserve better answers, better treatment, and someday, hopefully, a cure. Until that day comes, many of us will keep speaking up. Not because we aren’t exhausted. But because we remember what it felt like when no one was speaking up for us.

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Friday, February 27, 2026

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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Friday, February 6, 2026

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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Friday, January 30, 2026

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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