Carly Goldin is a 39-year-old wife, stay-at-home mom of two boys, and athlete managing multiple autoimmune diseases. Carly hopes through sharing her story she can empower others struggling to find ways to cope and even thrive through knowledge and movement.
Fitness has always been such a big part of my life. I played soccer growing up, ran cross country and track in high school and remained very active during college. Leading up to my wedding, I did either bootcamps or cardio almost every day and continued working out during my first pregnancy.
The First Signs
Soon after the birth of my first son in 2013, I noticed a lot of painful, red, and blistered areas on my toes. I had no idea what was causing it. I saw my dermatologist and my primary care provider, and blood work showed a positive ANA (antinuclear antibody) test. This test can be a sign of an autoimmune disease, so I was sent to a rheumatologist.
The rheumatologist told me what I was dealing with was Raynaud’s disease, a condition that affects blood flow to the fingers and toes. He explained that it can happen on its own or be an early sign of another condition. Nothing else showed up in my bloodwork, but because of the Raynaud’s, he recommended an annual checkup. At that point, I wasn’t really worried.
When my annual rheumatology visit came up, I was six weeks pregnant with my second son. At this visit, a few more markers for disease popped up in my blood work. It still was not enough for a clear diagnosis, and I was assured that my pregnancy should not be affected. I still wasn’t worried at this point, but I also didn’t know much about autoimmune disease. I continued working out my entire pregnancy and chased my 2-year-old around.
Four Diagnoses at Once
Unfortunately, after giving birth, I experienced a lot of issues. My most prominent symptoms were severe back pain and muscle weakness. I could barely walk, much less care for a toddler and a newborn. I could barely take care of myself. About eight weeks after giving birth, I went to my rheumatologist because I was just not getting any better. At that visit, I was diagnosed with lupus. That’s when the fear and panic set in.
I live in a smaller town, and my family begged me to go to a larger hospital system to get a second opinion. Unfortunately, after seeing another rheumatologist in 2015, at age 29, not only did I learn that I did indeed have lupus, but I was also diagnosed with dermatomyositis, antiphospholipid antibody syndrome and Hashimoto’s disease. Four autoimmune diseases at once. I hardly knew anything about lupus, let alone everything else the rheumatologist rattled off.
For the first few years, it felt like every few months brought something new relating to my diagnosis. A new symptom would arise or I’d fail another treatment. It got to the point where I was panicking any time I read a radiology report, new test results popped up in my patient portal, or I had to start a new treatment.
When Pushing Through Didn’t Work
I didn’t know what my future was going to look like or how I’d be able to be the best mom to my boys. I lived in constant fear and panic, so I turned to the space where I always found relief: fitness. I returned to my running roots, and I wanted to rebuild to run 5Ks again. During my training, I pushed through a lot of pain. I had a chip on my shoulder. I was determined to show everyone, including myself, that I could still do what I wanted to do in spite of multiple autoimmune diagnoses.
That mindset didn’t end well for me. In 2019, I tore my adductor, which is a muscle in the inner thigh, and could not put weight on my leg for three months. My doctors told me that running was just too hard on my body with all it was fighting. I crumbled. Fitness had become such a release and way of coping through so many stages of my life, before and after my diagnosis.
Finding a New Way to Move
Once running was off the table, my husband did some research and told me about this fitness company called Peloton. He told me we could buy the bike, and I could stream all types of classes from the bike in addition to cycling like yoga, strength training and stretching. This seemed like it would be a better option for my body and would still give me an outlet.
I was skeptical at first, and it took me a few months to buy into it. I felt stuck. I’d heard that the Peloton community and instructors interacted a lot on Instagram, so I decided to create an account dedicated to documenting my journey as an athlete managing multiple autoimmune diseases and to connect with the community.
Soon after, COVID-19 hit. As a severely immunocompromised individual, this added a new level of fear and anxiety. For the first time, I felt truly alone and isolated. I couldn’t go much of anywhere, and when I did, I had to be so careful. I became a nuisance to a lot of people I thought I could lean on.
Finding My Community
During this time, I really leaned into exploring the online Peloton community and different groups within it. I met other warriors fighting illnesses. I met cancer survivors. I connected with people grieving in one way or another. I found so many people dealing with struggles of some kind, but one thing we all had in common was that we were fighting for our lives and fighting to be our best selves for our families. We were all showing up to better ourselves in the same space, miles apart but connected by fitness. This is where I found community, understanding, inspiration and some of my best friends. That’s where I started taking my life back.
Letting My Diagnosis Shape Me in Powerful Ways
For a long time, I grappled with how to move forward after such a life-altering diagnosis, without letting it define me. The truth is that my diagnosis does define me because it affects every single aspect of my life. Lupus and dermatomyositis have become such a huge part of my identity. Not only do they significantly impact my daily life, but they’ve also forced me to find a drive that I would’ve never had to dig deep enough to uncover without going through the challenges I face. Finding ways to survive, and even thrive, through difficult circumstances has been one of the hardest things I’ve done and continue to do every day.
My training and community have gotten me through flares, sickness, eight-hour infusion days, surgery and daily life as a busy mom. They’ve reminded me of who I was before I got sick and helped me become an even stronger and better version of myself. They’ve given me back my confidence and changed my perspective on what the future looks like for me.
My journey has been a bumpy one for sure. It’s been eleven years since my diagnoses, and I’m still learning to embrace the ups and downs and use them to fuel my fire. I face plenty of challenges managing multiple autoimmune diseases, but because of those challenges, I’m the strongest I’ve ever been, physically and mentally.
Finding Support in Community
It’s almost impossible to say we won’t let our struggles define us because how we face those difficult times shapes us into who we become. My training and the Peloton community have shown me that I can do hard things and overcome struggles but still find joy, gratitude and strength in those tough moments. I know I wouldn’t be here today doing as well as I am without their love and support. I’m lucky to have so many warriors in this community who show me what fighting for yourself looks like, and they’ve taught me to let my struggles define me in empowering ways that push me to rise above and to overcome.
Follow Carly’s journey on Instagram @carlygoldin
Are you interested in more resources about myositis?
Enter your email below to subscribe and receive our newsletter and resources!
