I acted like everything was fine, but hid a lot of pain underneath the laughs and smiles

June 3, 2016

 

Hello everyone, my name is Destiny and this is my chronic illness story. By looking at me, you probably wouldn’t know I’m chronically ill. Growing up, everyone called me Sunshine because I seemed happy all the time. I acted like everything was fine, but hid a lot of pain underneath the laughs and smiles. I didn’t want to be judged or be seen as weak.

 

Since age 11, I’d had painful menstrual periods, constant abdominal pains, nausea, and fatigue. I told my mom and aunts about it, but they said pain was normal. At school, the counselor agreed with them. She said slight discomfort was to be expected. I figured they were right and powered through each month. But as time passed, things got worse. By high school, dull aches during my period had morphed into sharp stabs and waves of pain I couldn’t escape. I tried many things to stop the pain: Tylenol, Midol, heating pads, exercising more, resting more, etc. Yet nothing helped! I continued to bring this issue up with family, but their response stayed the same: your pain is normal; deal with it. But by my third year of college, the pain had escalated even more.

 

It affected me daily. Moving around became more difficult. I’d feel so weak and lightheaded I didn’t want to leave the house. Going to classes and spending time with people became a struggle. So I decided to see a gynecologist. I was 20 when I started seeing her. After going over my symptoms, my doctor suspected I had Endometriosis. What the heck was that?! She explained it’s a chronic disease that occurs when cells from the lining of the womb (uterus) grow in other areas of the body. As she spoke, I felt like the room was spinning. I wanted to scream and cry. I couldn’t believe what I was hearing:

 

Chronic disease. No cure. Possible infertility. Multiple surgeries needed…

 

She said doing a diagnostic laparoscopy was the only way to be sure I had the disease. But she put me on birth control first to see if it would help. By the end of that appointment, I figured I was doomed to a life of pain. On the outside, I managed to stay upbeat. But inwardly, I was overwhelmed and sad all the time. I felt alone and wasn’t sure how to talk to my family and friends about it. After being on birth control for a year, my symptoms hadn’t improved. I wanted to go forward with surgery, but my doctor was hesitant about it.

 

First, she suggested pregnancy. Did you do a double take while reading that? Because I sure did when she said it. She claimed it would suppress or eliminate the pain, but I wasn’t about that life just yet! I wasn’t with anyone at the time. There was no guarantee pregnancy would cure me and I wasn’t ready to be a mom. And why was having a baby more important than dealing with agonizing pain? She suggested waiting until I had level 10 pain everyday to do surgery. But I was already there! So she agreed to do surgery ONLY if I agreed to be put on Lupron afterwards. It’s a strong medication that causes a chemically induced state of menopause. After doing some research, I decided that wasn’t for me.  We couldn’t see eye to eye on that, so I got a second opinion.

 

I began looking up gynecologists in the area that had plenty of experience dealing with Endo. After finding a new doctor, I got my records from my old doctor and never looked back. After looking over my records and examining me, my new gynecologist agreed to do the operation. I couldn’t believe it! He believed me and offered to help. A few weeks later, I had surgery which confirmed I had Endometriosis. It had covered my entire bladder!

 

 

After surgery, my life changed a lot. Although there is no cure, removing Endo by excision may prevent it from coming back. Recovery after surgery wasn’t fun, but it was worth it. The pain hasn’t returned to what it was before. Pain medication, being on birth control pills and making sure I don’t overdo it has helped. I’ve been able to focus on my studies, work and feel like my bubbly self again. Instead of keeping to myself, I can go out and spend time with my wonderful family, friends and boyfriend. In spring 2015, I participated in the Disney College Program. It was a dream come true living in Orlando and working at Walt Disney World for a semester! When I returned home that summer, I was able to finish my last semester at Armstrong State University and walked across the stage in December. Without a diagnosis or a successful surgery, I don’t think I would’ve been able to do all those things.

 

Other chronic illnesses have come around to stir up trouble. In the past year, I’ve been diagnosed with Interstitial Cystitis (aka Endo’s evil twin), IBS and Hidradenitis Supperativa. My other illnesses are managed with medications and making sure I avoid things that trigger flare ups. Most days, medicine and rest helps. And there are times the pain is so excruciating all I can do is curl up in a ball and wait for it to pass. Yet my doctors have been so amazing and helpful during this journey. I’ve had some bad experiences with doctors. But my doctor and specialists listen to my concerns and encourage me to keep going.

 

I wish I could tell you my story has a storybook ending. But that’s not how life always goes, right? This isn’t what I imagined for myself. I try to stay positive and appreciate the things I have. But I vent about my frustrations when I need to. I will have some tough times and choices ahead of me. But through this journey I’ve gained patience and perseverance. I’ve learned to speak up and advocate for myself. I’ve grown and learned to be strong in ways I didn’t know I could. Through this, I’ve gotten to know others with chronic illnesses and hear their stories. And my eyes have been opened to a world of invisible illness I didn’t know about before. I hope there will be more awareness about invisible illnesses others can understand it better.

 

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