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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