Raynaud’s Disease: How The Disorder Affecting 20% Of Adults Transformed My Life

Early Signs

My name is Ashley Spivey. I’m 23 years old and this is my personal journey with Raynaud’s Disease.

I was diagnosed back in June of 2021 after a vacation in Destin, Florida with my boyfriend and his family. Everything was absolutely amazing until our last day.

We were relaxing on the beach when I started to get a really bad headache. I thought nothing of it until we were walking back to our condo across the street. Suddenly, my legs and arms were really sore.

Originally, I had assumed I was just sunburned and wanted to sit and relax in order to feel better. However, my partner Brock and I noticed my hands, legs, and toes were really swollen and purple.

I thought a drink of water would help me, so Brock took two steps away from me to get me some water and suddenly I blacked out. According to him, I was shaking really badly, similar to a seizure. I received help getting to bed and faded in and out the rest of the day.

The morning we were leaving Florida, I went to the restroom to make sure I grabbed all of my toiletries. The next thing I remember, I woke up on the bathroom floor by the tub with a sore head. I knew I had hit my head off of the tub.

Walking was an absolute nightmare. My socks and shoes, even my sandals, didn’t fit. It literally felt like I was walking on a bed of nails.

Nonetheless, I did the craziest thing and refused to go to the hospital. I didn’t want to mess up anybody’s work plans by making us return home late. I also didn’t want to have anybody from my family with me because I didn’t want to worry them over just a silly sunburn.

I would have never guessed that it was a bigger issue to come.

Road To Diagnosis

My partner, his family, and I stopped in Tennessee on the way back from Florida to get some rest before the remainder of the drive back home to West Virginia. I was supposed to officially start my new job upon my return, but due to my health I had to tell my new boss I needed to start late. I knew consulting with doctors and getting a better understanding of what was going on was the right move.

My new team was okay with this at first, until I had about 10-12 appointments with all kinds of doctors, specialists, X-rays, MRIs, ultrasounds, and heart monitors. However, after a whole month of testing, I finally got a diagnosis of Raynaud’s Disease.

Raynaud’s Disease is a disorder of the small blood vessels of the extremities, reducing blood flow. When exposed to the cold, blood vessels go into spasms, which may cause pain, numbness, throbbing and tingling, emotional distress may also trigger such a response.

The fingers are usually the primary affected areas, although toes, nose, ears and other extremities may be involved. It affects roughly 5-10 percent of the population. It is painful to move a lot of the time and medication and naps is how I get through the day.

I felt so sad when the news came. I remember calling my boyfriend, upset because I was sure he would see me differently and think I wasn’t special anymore. But what he said on the phone was the most amazing and beautiful thing ever said.

He was happy we knew what was wrong. He said ‘we’ would get through this and not just me. I felt so happy to not be alone with the battle of this illness and to feel supported every step of the way.

Raising Awareness

When I first started my medicines, everything felt fine. After some time, however, I started feeling less like myself. I was more emotional and had a new habit of binge eating. This resulted in me gaining 40 pounds and developing a poor relationship with my body.

After months of struggling, it hit me one day that I should raise awareness about my disease in the form of a nonprofit organization dedicated to educating individuals on early warning signs of Raynaud’s Disease.

Since beginning my organization, it has had an amazing impact so far and also motivated me to get myself healthy. It inspired me to go to the gym and eat healthy, which has resulted in the loss of 20 pounds. I feel so much better about myself knowing I have gained some control over my body and mind again.

This process has been full of struggles and progress, and I am currently awaiting a second diagnosis this year.

Being diagnosed with Raynaud’s Disease has made me a stronger person, but I don’t think I would have gotten through this without my friends, family, and my loving boyfriend and mom.

Emotional Healing

My healing journey was not easy. I’m still battling with it everyday.

I’m currently in the process of getting a secondary diagnosis due to my worsening symptoms. I must take daily naps after taking my medicine because it honestly kicks my butt some days. Sometimes, one day is a lot easier than the other.

I always need to be prepared when traveling just so I feel comfortable going places again. I have a constant fear of something happening and nobody knowing what to do. Almost getting fired from my job because of needing medical attention was also a difficult one for me.

My words of encouragement for those out there struggling with RD or another illness is that it will test your limits, but it can’t break you if you don’t let it. You can overcome anything thrown at you and make a positive change despite it.

My personal advice for others is to never let a symptom go unchecked; never be scared or ashamed to talk to a doctor about any symptom or feeling. In the meantime, self-care is crucial for your overall physical and mental health. Take the time to take care of yourself.

Lastly, the most important message I want to get out there is that something like this may come at a bad time or be unexpected, but it’s okay because sometimes you never know what’s going to happen to you in life. Life will test you to see who is really there for you at the end of the day.

It is imperative to have a support network. Support does not always need to be a close loved one; it can be an online support group of people who live with the same disease.

I lost some friends when I was going through everything, but in the end I gained new amazing ones that have been right there beside me. A great support system really makes it a lot easier to go through because you don’t feel so alone.

I honestly felt like a weirdo or a freak because nobody really knew what this was and why it was happening to me; I felt so alone and it was a struggle mentally. It’s a day by day process but if you really put your mind to one thing, even if it’s as simple as one goal a day, you can overcome anything.

This story was submitted to Love What Matters by Ashley Jade Spivey. Join the Love What Matters family and subscribe to our newsletter.