Autoimmune Stories:

Ashley’s Story: Turning the Tables on Primary Raynaud’s Disease

Ashley Spivey August 4, 2022

Chronic illness can change your life in the blink of an eye. That’s what happened to Ashley, who was enjoying a carefree vacation when she began to suffer numbness and blackouts out of nowhere. After a complicated and frightening journey, she was finally diagnosed with primary Raynaud’s disease. While battling the physical and emotional effects of her illness, Ashley began looking for ways to turn things around. In her autoimmune story, Ashley reflects on her struggles, her growth, and how she is now giving back to the Raynaud’s community.

Ashley’s Story

Hi, I’m Ashley Spivey and I’m 23 years old. My story started in May 2021 in Destin, Florida. I was vacationing with my boyfriend and his family for the first time, and the trip was my birthday present. Everything was going wonderfully until our last day. We had gotten a really bad sunburn, but nothing really stuck out at the time. We just thought we had bad sun poisoning, so we figured we’d go back to our place, relax, and get out of the sun. No biggie, right? Wrong– in my case, it was the start of a terrifying journey. 

While we were relaxing, my boyfriend went to get me a cup of water because I had started feeling lightheaded, weak, and dizzy. He took two steps away from me and I blacked out. When I came to, he told me that I passed out and had started shaking and convulsing really hard for around 15-20 seconds. I was so sore I had to be carried to bed.

I was burning up on the inside of my body, but on the outside, I was so cold my arms and legs were turning purple. My limbs were so cold to the touch that I couldn’t feel a single thing.

I refused to go to the hospital because I thought, “Why go? They are just gonna tell me it’s sun poisoning and waste our last day of vacation.” Plus, my family wasn’t there, and that added a little more fear as well. So we drove back to our home state of West Virginia the next morning.​​ Soon, I had another blackout. This time, I was gathering some things from the restroom when I suddenly woke up next to the tub. My head was sore as if it had hit the tub when I fell. My feet were so swollen that my Crocs wouldn’t fit, so I had to wear socks while my boyfriend carried me. When I finally got home, I learned that my boyfriend had already told my mom about the blackouts. She booked me a doctor’s appointment for the very next morning. 

That one visit turned into multiple visits with about ten different doctors, and nobody could figure out what was really going on– until one doctor took the time to hear me out. She knew without a doubt what was wrong with me: I had primary Raynaud’s disease.

The medicine they put me on had me feeling so awful– I didn’t feel like me anymore. I was depressed, binge eating, sleeping all the time, and in a funk that I couldn’t escape from. I was so worried about what people would think of me now. One day it hit me randomly: why don’t I do something great about this and start a nonprofit with custom Raynaud’s gear, where all the money goes to a nonprofit supporting Raynaud’s disease? 

Over time, I got my mental health right where I needed to be. I got healthier, started going to the gym more, and started taking a positive spin on all of the bad things. 

Yes, I have good and bad days–but you can’t let the bad days break you. That’s what gets me through. I couldn’t have gotten through any of this without my mom, my boyfriend, and my friends who were always there for me. I thank them from the bottom of my heart.

Global Autoimmune Institute Mini LogoThe views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.

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