I've recently discovered something very powerful. Something that has, in a way, changed my life.
The power of sharing your story. The power of a support system. And, the power of a hashtag.
The other day, I was having a rough week. I wasn't feeling well (keep reading to find out why...), and was tired of not feeling well. I was reading an article when I saw #endometriosis. Yes. A hashtag has changed my life. Right away, I typed #endometriosis into instagram and in a split second, there were hundreds of pictures and so many women who were posting stories, pictures and experiences of the exact thing I was going through. Finally, after 5 years, I found people who understood.
As you may have gathered, I have endometriosis. Something that has defined my life the past 5+ years. I'm not writing to get sympathy, or for you to feel bad for me. I'm writing because a hashtag has taught me how important it is for people to share their stories. Sometimes you go through things so you can help another person go through something similar. And lately so many people (yes, the strangers on instagram) have helped me feel not alone and broken.
**Disclaimer - MEN, if you're reading this, beware. I'm writing about girls things. And, not the shoes and shopping kind of girl things. BUT, I encourage you to read still. It's just as important for men to have an understanding in the subject.**
About 5 years ago, my health started to somewhat kick my trash. Pain and nausea became a constant, overbearing element in my life. I spent most nights not sleeping, curled up in a ball. (To this day, I can't watch The Notebook. I "watched" that on one of my worst nights. Issue.) The doctors office became part of my weekly, sometimes daily routine. I didn't love it.
Another awesome thing was that I was in school. And working. Luckily I had the most amazing, understanding boss, and somewhat understanding professors. However, It came to the point where I had to drop out of school. Turns out constant pain and nausea wrapped around no sleep makes it hard to go to school and succeed.
I don't need to go into detail of all the fun guesses of what the doctors thought I possibly had. That would take too long. After a long 2+ years of more doctors, needles, pain meds and 3 mini procedures, a gazillion misdiagnoses, I had had it. It's exhausting being sick, no one understanding and constantly stumping doctors. Feeling like friends and family thinking that you're a hypochondriac... now that's quite the feeling of support.
I learned really quickly that because I wasn't in a wheel chair, bald from chemo, or walking around with an oxygen tank stuck up my nose that people didn't take my illness seriously. It wasn't because they didn't believe me, it was because they didn't understand. But that doesn't make it any easier.
(I respect and sympathize 100% with people who are in wheel chairs, going through chemo or have oxygen tanks :) Just illustrating the point that people who suffer from invisible illnesses don't have outward scars on the inward war their bodies are fighting.)
I started doing more and more research and came across a disease that I hadn't heard of before. Endometriosis. It effects millions of women (176 million to be exact). "Endometriosis is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life and her ability to live her life in very basic ways.
In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis." Dr. Andrew Cook
I researched doctors and found one in Provo not too far from me. I made an appointment and finally felt like this could be the end to all this pain and nonsense.
The day of my appointment finally came and I was beyond ready to kick some butt. My doctor walked in, sat down, and before she could even ask me why I was there I said "I am pretty certain I have Endometriosis. I'm tired of feeling sick and being in pain all the time, so I'd like to schedule my surgery today." (Endometriosis can only be diagnosed through surgery. Fantastic.) Turns out doctors like to be the one who gives the diagnosis. Interesting. Even more interesting though is that after she asked me probably 1,359 questions, she agreed with me that I "had symptoms that would suggest Endometriosis". Obvi.
But...
She wanted me to try a different type of treatment before we went to surgery. For 3 months. At this point, I kind of wanted to punch her. In the uterus. (Confused why I wanted the uterus? Read on...).
So, whatever. I did the 3 months of treatment and sure enough, I still was not feeling better. Shocker. Not even an ounce. This time, however, I brought my mom with me to the doctors appointment. Good to have back-up when a brawl is about to happen. My doctor agreed (without the brawl and getting punched in the uterus) that I needed surgery.
Before we scheduled the surgery, she wanted one more ultrasound just to make sure there wasn't a tumor, or cyst. (Been there, done that. But, ok!). I went back in for my ultrasound --->> sidenote --->> ever been to an OBGYN's office in Provo, Utah waiting for an ultrasound in a room full of pregnant woman? Except, you don't have a wedding ring on... Just think of all those looks I got. Kind of funny actually. --->> moving on --->> ultrasound... I lay down, she puts the cold goo on my stomach and starts looking around. The first thing out of her mouth was "Wow, I don't know if you'll ever be able to get pregnant." (Hey, future husband! Don't stop reading and run away quite yet! It's more likely now I'll be able to birth your children.) So, for obvious reasons, at his point, I'm not loving this ultrasound tech (and she looked like the blonde chick on Lost who falls in love with Sawyer. Loving my man, AND telling me my uterus sucks. She definitely dipped far down into the negative scale for me).
After that appointment, I got in my car and sat there. Then cried. For 45 minutes. The physical pain that comes with an invisible illness is far from great. But for me the emotional pain was so much harder to bear. To everyone else, I looked fine. So I was forced to pretend to be fine, when really, my insides were covered in lesions, blisters and scar tissue.
 |
| Pre-Surgery. Not my best hair day. |
Waking up from surgery was a moment I will never forget. I remember opening my eyes, looking over at my mom and she said "Sarah, you have Endometriosis." I didn't understand why she wasn't jumping up and down like I wanted to at that moment. After years of not knowing why my body hated me, I FINALLY knew! I wasn't crazy.
I laid in that bed, that awful awful bed, feeling vindicated. Relieved. Like I had won a war. Recovery was rough. The way endometriosis is treated is by burning the scar tissue, blisters and lesions off your organs (endometriosis can't be cured. It is just temporarily treated. Surgery every 2-6 years. Fun.). Unfortunately for me, they couldn't get it all out. So, I deal with complications from that every day.
So, maybe you're now thinking, "so what, you just have endometriosis". Yes, I just have endometriosis. Except it's not just endometriosis. Most women who have endometriosis also have more illnesses to accompany it (Interstitial Cystitis, Fibromyalgia, Chronic Fatigue Syndrome and the list goes on. Luckily I don't have all of them). My diseases aren't going to kill me. They're not going to completely ruin my life. But, they're going to always make it harder for me to do the average thing. Yes, at times, still after surgery, I can't stand up strait because of the pain. (If you ever see me walking around, a little bent over, looking slightly, or more than slightly pregnant, no need to be confused. No, I'm not pretending to be 98 years old. And I'm also not pregnant. My insides are just swollen more than my abdomen can handle. It subsides eventually.)
I'm not sharing part of my story to get sympathy or any of that. I don't need people feeling sorry for me. Because, I'm quite okay. I've learned that just because I'll have debilitating illnesses for the rest of my life, doesn't mean I can't live a normal, happy life. I'm sharing my story because the hardest part of having an invisible illness isn't the physical pain. It's the emotional pain and the lack of understanding from others. But, I've learned that if people don't know about a struggle in your life, they can't make that first step and try to understand.
Awareness is power. I hope that by sharing my story, people can be more aware of others around them. Chances are that more than one person you know suffers from an invisible illness. Don't be quick to judge. Just because you can't see that someone is in pain and is sick, doesn't mean it's real. It is more than real to them. It's a way of life.
_______________________________
*If anyone would like more information on Endometriosis, let me know. I would be more than happy to share more about it.
**A book that has helped me understand more about my illness is "Stop Endometriosis and Pelvic Pain" by Dr. Andrew S. Cook. I HIGHLY recommend this book. So much that I plan on making the trip out to Northern California in the next few years for my next round of treatment from the doctor who wrote the book and specializes in Endometriosis.
