Feeling Invisible

Having an invisible illness, or multiple in my case, is a uniquely lonely experience. No matter how hard others try to understand, no matter how much time they spend with you, they’ll never truly get it unless they’ve lived it themselves. And that’s not their fault. I’m incredibly lucky to have some of the most supportive friends and family, even though they don’t fully understand what I go through every day. Honestly, I’m glad they don’t. I’m glad they don’t suffer the way I do. I wouldn’t wish any of this on my worst enemy. But that doesn’t make it any less lonely.

On top of feeling invisible, I often feel misunderstood. It’s so hard to explain what I experience in my body every single day. Feeling exhausted after doing nothing. Being in extreme pain but still having to show up and move forward. Carrying the guilt of not being able to participate in life the way I want to. Crying on vacation because my body hurts so badly, while seeming ungrateful even though I wouldn’t want to be anywhere else. Skipping breakfast with friends on weekend mornings because I need to sleep as long as possible to make up for another night of restlessness. Begging for accommodations at school while fearing judgment or denial because I look “fine” and put together on the outside. Going home early when all I want to do is stay. Spending hours driving across states for doctor’s appointments week after week. Living with the constant fear that my heart could give out at any second, or that my endometriosis is growing back with a vengeance.

Because others don’t understand my lived experience, it’s hard for them to grasp that this is simply my life. So sometimes, they forget. I almost never show it outwardly. They invite me to hike mountains or run 5Ks as if that’s something my body can do. I wish it was. But that’s not my reality right now.

The person I am today has been shaped by living with invisible illness for the last ten years. I don’t care what others think of me because I’m too focused on staying alive. I have a lot of confidence, because if I can survive ten years of feeling miserable in my own body, I can survive just about anything. Sometimes I can be blunt. Sometimes I forget others’ feelings. After being worn down by illness for so long, I’ve lost a lot of my sensitivity, and I’m still learning how to balance that.

My friends sometimes give me a hard time because I don’t love meeting new people or letting others get close to me, especially as I’ve gotten older. What they don’t see is how exhausting it is to explain my limitations over and over again. It’s awkward. It’s invasive. And yet, it’s often necessary just to justify why I do the things I do. My energy is extremely limited, and I want to spend what little I have loving on my inner circle, the people who have been through it with me. The ones who have tried, in their own ways, to understand.

Even if my loved ones don’t fully understand what I’m going through, they still find ways to show me they care, and I appreciate it more than they know. Seeking out the only chair in the bar and giving it to me. Checking in when I go quiet. Letting me cry and vent my frustrations (thanks, Mom). Suggesting something low-key instead of a night at the club. Making sure I’ve made it home safely. Validating my feelings around chronic illness. Sending flowers or my favorite food after surgery. Showing a genuine, consistent interest in my well-being. I am so deeply thankful.

All of this is why I created this community ten years ago and why I continue to lean on it for support. I know others living with invisible illness feel this same mix of loneliness, gratitude, exhaustion, and resilience. And while I hate that any of us have to experience this life, there is comfort in knowing I’m not alone. The worst club with the best members, as we like to say. In the end, this space exists to remind us that even when our pain goes unseen, our stories still matter, and we don’t have to carry them by ourselves.

Follow me on social media! 

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

Journaling & 2026 Health Goals

Journaling used to scare me. I never wanted to be left alone with my thoughts, because that’s when the pain would creep in and take over. I still don’t love being alone with my thoughts, but as I’ve gotten older, I’ve realized that journaling can be a healthy and productive way to get to know yourself and to start writing the future you want into existence.

Now that I’m entering my twenty-fifth year, and my brain is finally finishing up its development, I can actually picture a future for myself. That’s something I wasn’t able to do before. This shift, along with a new sense of optimism, has led me to create goals for myself for pretty much the first time ever.

Most of those goals are health-related, as I continue working to address my heart conditions, chest pain, and ultimately get my quality of life back. I’m sharing them here as a form of accountability, but also in the hope that they might offer some motivation to others in a similar place.

Living with chronic illness and pain for nearly half my life has taught me that my body has limits, and that things don’t always go the way I plan. That’s made goal-setting especially difficult for me. But this year, I want to use journaling as a way to manifest the future I want for myself, starting with setting attainable goals and giving myself grace as I work toward them.

You’ll notice there isn’t anything too extreme on this list, but these are all things I’ve wanted for myself for years. And for the first time, the puzzle pieces are finally coming together in a way that makes me believe they’re actually possible this year.

Without further ado, here are my 2026 health goals:

1. Have my night in the sleep lab, get my CPAP machine to treat my sleep apnea, and get my sleep issues figured out once and for all.
2. Have my third catheter ablation surgery for my atrial fibrillation heart arrhythmia, and take the time to fully heal from that surgery,
3. Once that is completed, I want to get off all the medications I'm on for my heart. They make me lethargic and have no energy, and that's a feeling I don't want to experience anymore.
4. Once my sleep is figured out and I'm recovered from my surgery, I want to get back to moving my body and working out to the best of my ability. Nothing too crazy, but certainly a step up from doing nothing. 
5. Meet with a clinical dietitian who specializes in an anti-inflammatory diet and start consistently cooking healthy meals for myself.
6. Be better about saying no when I don't want to do something.
7. Don't feel guilty for listening to my body.
8. Only put work into relationships that fulfill me. I only have so much energy to give.
9. Heel stretches daily for my plantar fasciitis.

Some non-health-related goals:

1. Finish grad school and get my master's degree! 
2. Read at least 70 books.
3. Start writing on my blog again regularly! 
4. Go to Ireland.
5. No buying clothes or shoes unless absolutely necessary. 
6. Pay off most of my student loans. 

I got a cute new journal to start the year and filled it with all my goals. Years ago, some friends and I attended a talk in college where the speaker, a successful businesswoman, talked about the power of writing things down if you want them to come true. That idea has stuck with me ever since.

I’ve seen it work for the smaller things in my life, but I’ve always wondered about the bigger ones. So this year, I’m really testing that theory. I’m writing down everything I want, without overthinking it. I even started a list of five-year goals that I plan to keep adding to as they grow and change.

Whether it all comes to fruition or not, I know I’m doing everything I can to make 2026 the year I get my quality of life back. And if you’re feeling stuck or hopeful or somewhere in between, I encourage you to join me in journaling and creating the best future we can for ourselves.

Me and my trusty journal!

Follow me on social media!
Instagram: @endoisnottheendblog
Twitter: @endoisnothend
Facebook: Endo Is Not the End

Prioritizing Friends in College (while having a chronic illness)

 I'm happy to report to you that since the last time we spoke, I am doing much better! I have been back on the daily grind of doing my internship, leading my clubs, singing, and spending time with friends. As my college experience is wrapping up shortly (I have less than 3 semesters left, so crazy!), I have made sure I am prioritizing my friendships here more than I ever have. Whether it's sacrificing a few hours of sleep or simply doing homework silently, but in the presence of each other, it's so important to create those bonds. These are the people that always support me when I'm not feeling well and have fun with me when I am. They often have to drag me out of my bed, but I'm always happy they do. Some of my friends and I are even going on a trip in a few weeks which is something I never would have thought of doing a few years ago when my pain was really bad. I want to share some of the things I try to remind myself of when I'm feeling guilty about having fun (even though it's ALWAYS okay to have fun:)

1. It's okay to lose a few hours of sleep if you're busy having fun and making memories with your friends!
2. I may not be feeling my best right now, but I know I'll be having fun once I'm with my friends!
3. College is the time in your life to be prioritizing friendships before you're all off in different places!
4. It's okay to count spending time together as just being in the same room- you don't need to always be doing something crazy and high energy!
5. It's OKAY to say yes more to things that aren't school and work-related!!!!!! (I'm definitely still learning this one)

All of these things are easier said than done and it's taken me three years of college to finally let myself have fun. I don't know if it's just me, but I always feel guilty about doing fun things if it's not productive. However, hanging out with your friends is productive and an amazing use of your time because you'll have those bonds and memories to last a lifetime! 

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

My Pelvic Floor Physical Therapy Experience...

Many of you who follow me on Instagram have asked recently if I could share my pelvic floor physical therapy experience and what I do at my appointments. PT is a very common treatment for endometriosis and interstitial cystitis, so I am happy to share my journey with you for my last blog post of the year!

Backstory: 

 My pelvic floor physical therapy experience started before I was even diagnosed with endometriosis when I was only 14. At that point, I had seen many doctors that could not find anything wrong with me, so PT was pretty much my last hope. My PT, who I still go to today, was the first medical professional to validate my pain and ensure me it was, in fact, real. This was huge for me as someone who was constantly told I was making my pain up and just being a dramatic teenager.  When I first started going to PT, I was diagnosed with pelvic floor dysfunction. Since I was (and still am) constantly in pain, I was always clenching my pelvic floor muscles, making them extremely tight. I actually learned this week at PT that when you have chronic pain, it doesn't just affect the muscles directly where the pain is; it affects all the muscles in the body if you've been in pain as long as I have. This has caused me to have hypersensitivity to touch to the point where I'm in terrible pain if someone simply pokes me in the arm, but that's a whole other topic. 

The first time I went to PT, I didn't go for that long because I thought that since I got a diagnosis, I didn't need to anymore, but I was very wrong. When I had an appointment when my endometriosis specialist this past January, he suggested I go back to PT. I knew it would help me and my pain, but I didn't know if I was ready to do that yet. A part of my PT is using vaginal dilators because my pelvic floor muscles are so tight to the point where I can't even use a tampon without incredible pain. Using the dilators before I found out I had a septate hymen (the skin over the vaginal opening that normally breaks when you're a baby, but it never broke for me) was extremely painful. I didn't think I would be able to put myself through that pain again. However, I knew it would be different this time because I had surgery to take care of my septate hymen over three years ago, so it should be all healed. 

Over the summer, my whole mindset changed when I started reading many books about endometriosis and how it affects so many different aspects of the body. PT was the missing part of the puzzle that I needed to complete to continue helping myself heal. I decided that I needed to go back to PT if I ever wanted to have a semi-normal life in the future. I was too young to understand its benefit the first time, but now I understand it is essential to my future. Well, it's safe to say that I'm very happy with my decision! I started back up in August, and I'm very motivated to get my body working the way I want it to. 

What do you do in pelvic floor physical therapy? 

Obviously, everyone is different, so I'm only here to share my experience. Everything I do in PT is about loosening up the muscles in my body, specifically my pelvic floor muscles, abdominal muscles, thighs, and lower back muscles, as well as keeping my body aligned. 

Like I said before, I use vaginal dilators to loosen my pelvic floor muscles. This is hard for me to talk about because it honestly embarrasses me that my body can't just work like everyone else's. It is hard for me to post this on the internet, but I decided that it's important before so many people with endo also experience pelvic floor dysfunction, and I don't want to be ashamed of it. All I want is to help at least one person like me and show them that they are not alone. The dilators are the most important part of PT to me because, like I said before, I really want a chance of living as much of a normal life as possible in the future. The pelvic floor muscles have three layers. I use the dilators to stretch the first two layers and a curved wand to stretch the deep third layer. And that's all I'm going to say about that because it's getting to the point of too much information, lol. 

To loosen my abdominal muscles, I do a couple different things. When I'm actually in PT, my PT will lightly massage my stomach to start loosening up the muscles. When I'm at home or at college, I use a tennis ball to massage those muscles myself, which is super easy.

To loosen my thighs, I do a series of simple stretches at home a few times a day that I'm going to put pictures of below. These stretches are very simple ways to keep those muscles loose. I also use a tennis ball to massage these muscles. 

To loosen my lower back muscles, my physical therapist does the same thing she does with my lower abdomen and lightly massages it. I keep saying lightly because it is very important to not do a harsh massage because it can actually cause those muscles to kick in and make them tighter, which is not what we want. 

Finally, to keep my body aligned, I do simple self-correction stretches throughout the day that I will show pictures of below. Staying aligned is something my body has trouble with at times, but it's so important that everything is in its place, or it's going to mess everything else up. 

Conclusion:

I would be lying if I said that having to do all these extra things wasn't exhausting because it is, but I'm happy to do it because I know that I'm doing everything I can to help my body. Like I said in a recent Instagram post (@endoisnottheendblog), everything I do with my body is intentional. The way I sit, the way I stand, the way I get in and out of bed, what I eat, what I drink, how I turn my body, and so much more has to be intentional, or it can throw something out of whack. Basically, my number one goal every day is keeping my body aligned.

I would be happy to dive deeper into any of the things I talked about in this post, but this is a general overview of what I have to do every day as a part of my pelvic floor physical therapy. Right now, I have appointments twice a week while I'm home for winter break so I can get some of my interstitial cystitis symptoms to calm down before I go back to school (I plan on doing a different post about what I do in PT to help my IC symptoms). 

I know this was a lot of information at once, but I hope it helped if you have pelvic floor dysfunction like me or just want to learn more. Pelvic floor dysfunction is a very real thing that affects so many people, and it can be embarrassing to talk about, but I want to work on not being ashamed about it and sharing my truth. 

Happy Endometriosis Awareness Month!

Hey everyone! Wow, it's been a while.  I've been super busy with school and figuring all the college stuff out.  Well, it's that time of year again- Endometriosis Awareness Month! Over the past six months or so, I've seen so many new commercials and celebrities advocating for Endo! It gives me a lot of hope that a cure is coming soon.

As for my pain, it's been on and off depending on my environment and stress level.  This week for example, I'm in my school show that opens Friday, so I know it's going to be a stressful week.  Since I know my stress level and pain are related, I'm going to try my best to stay as calm as possible.  If my pain gets worked up, it will make me even more stressed out, so I'm doing everything I can to keep that from happening.

A new thing with me is that I started getting back to the gym.  Exercise is something that doesn't make pelvic feel great, but I know it's necessary so I don't have other health issues in the future.  I've gone to the gym a lot over the past two months, so I'm really proud of myself.  I normally go for two or three weeks, then my pain gets really bad so I stop going, but this time I'm determined to not let that happen.  Now, I've gone enough that I'm committed to keeping myself healthy and I know my limits, so I can tone it down on a bad day if I have to.

I'm going to try my best to post on here on a regular basis from now on because my schedule is becoming less busy.  Keep on the look out for more Endo related things in the media because that is really helping our community! Thank you for reading and happy Endometriosis Awareness Month and remember, Endo is not the End!

Ladies, Don't Let Endo Ruin Your Holiday Season

So, the holidays are coming up as you all know, this can be some of the hardest times to have Endo. Everyone is suppose to be happy and joyous but how are you supposed to do that if you have pain all the time? At least for me, my pain always comes at the absolute worst times and I just have to push through. During the holidays is one of  those times. I remember last year during the holidays, before I was diagnosed, I had a miserable time. My family celebrates Christmas and it is my favorite time of the year! Listening to Christmas music, driving around looking at lights, going ice skating, going shopping for gifts, ecetera are things I love to do. This season only comes one time a year and when you're in pain, you just feel like it's ruined. But don't worry ladies, even if you're in pain, you can still have fun during the holiday season. Here are some tips: don't go overboard with the sweets. The sugar can cause inflammation which might cause you're Endo to start hurting. Wear comfortable clothing so there's nothing pressing up against your stomach causing it to hurt. Finally, distract yourself by having fun with your family and friends. Don't ruin your holiday season by thinking you cannot leave the house. I hope you all have a happy and healthy holiday season! Thank you for reading and remember, Endo is NOT the end!

Relationships With Endo

Relationships with Endo are so hard. I have ruined several relationships because of my Endo. The worst part is, it isn't even the person, it is the chronic disease that makes you want to stay in bed all day.  It does not matter if it is a friendship or a romantic relationship, they can both be ruined because of Endo.  Like I said in my last post, women with Endo do not want to burden other people with their pain.  I know personally, whenever I see my friends and family, I always have a smile on my face even though I might not feel like smiling on the inside. Both friendships and romantic relationships take work, and with Endo, a lot of the time we do not have enough energy to even leave the house. What I have learned over the past year and a half is that, with Endo you realize what relationships are most important to you.  Since we have a lot less energy then the normal person, we are not going to waste our time on relationships that are not going anywhere.  I know I am only a teenager and haven't experienced a lot of relationships, but I have experienced enough to know that if you want to keep a relationship alive with Endo that it takes extra week.  If that person or people mean that much to you, then you will make it a priority to get out of bed and see them that day. It is also important to tell the people you are close to about your Endo so they know you are not just blowing them off. I know more than anyone that they most likely will not understand, but at least they know.  I very strongly encourage you to talk to the people close to you and not make the same mistakes I did.  Thank you for reading, stayed tuned for my next post, and remember, Endo is NOT the end!