‘You need to wait it out.’ I thought accepting my illness meant I was giving up. It wasn’t really living. I was simply existing.’: Chronic illness warrior says ‘romanticizing my life set me free’

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“My life has been an interesting one. In high school, I had to quit soccer due to a knee injury. It was then I realized I wanted to become a physical therapist. Due to the extent of the rehabilitation my knee required, I was close with the athletic trainer at my school. I was really interested in his job as well, so I looked to see if there were any dual programs out there. Luckily, I got into an accelerated, dual program for a doctorate in physical therapy and a bachelor’s in athletic training at Boston University.

My senior year of college was a combined undergraduate and graduate year, so my schedule was extremely rigorous. I was completely exhausted by the end of it. I came home from school and my body slowly spiraled. I had been running up to 5 miles at a time, and suddenly I was nauseated and dizzy after 10 minutes. I was lightheaded, I was struggling with short-term memory loss, and I was so fatigued all I could do was drag myself through my desk job and then go home and go to bed.

My doctor at the time told me it was mono and I needed to ‘wait it out.’ I kept returning month after month, telling him not only was I not getting better, but I was getting worse. He was insistent nothing was wrong and I needed to just continue to give it time. He didn’t run any more labs and didn’t refer me to any specialists.

Courtesy of Dani Fusaro

When the time came for me to return to clinical rotations and then to school, I was barely functioning. I saw new doctors in Boston so thankfully, I was diagnosed with Dysautonomia and a few bad persistent infections. I could barely attend school. I would leave the room to throw up in the bathroom in the middle of class, I would break down crying on the sidewalk during the walk home from class due to pain and fatigue, I’d lay on the floor during lectures just so I wouldn’t pass out, and more. It was the hardest time of my life. I can’t put into words what that time was like for me. I look back on it and truly don’t understand how I made it through 2 years of what essentially felt like torture.

Somehow, I made it. I almost took medical leave at the start of every single semester because it was getting just too hard. Every time, I decided against it because I was worried if I took medical leave, I’d never make it back to finish. I also saw how essential physical therapy was for chronic patients. I was desperate to become the healthcare professional they could lean on when they were struggling to balance it all. I wanted to be able to treat my future patients with the knowledge and understanding I had from being one myself. I wanted to be the person that gets it. I wanted to change the field of physical therapy from the inside, out.

After school, I yet again returned home. I finally had time to take time off to fully focus on my health for what I thought would be 6 months. Fast-forward 3 years, and I was still at home. During that time, we slowly figured out pieces of my health that weren’t adding up. I was diagnosed with Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Gastroparesis, Spinal Instability, and an immune deficiency.

Courtesy of Dani Fusaro

At the beginning of all of this, I fought against it fully convinced if I worked hard enough, I could get better. This illness would be just a temporary ‘blip’ in my past eventually, I thought. I was angry, bitter, and hyper-focused on every symptom. I’d analyze each one and track them to try and figure out what was wrong, with the intent of discovering a new treatment I could try to bring me closer to healing. This period was filled with terrifying uncertainty, turmoil, and desperation for validation. I felt stuck and also behind at the same time because I wouldn’t do things or start projects because I was waiting until I ‘got better’ first.

Instead of trying to fight everything, what I really needed to do was grieve. I needed to take the time to sit with my emotions and allow myself to feel the hurt, heartbreak, and pain I was experiencing from the realization my life would never be the same again. I needed to grieve the fact working as a clinical physical therapist simply isn’t a fit for my body and pain levels. I needed time to be sad and wrap my head around it all. When I should have been grieving, I was fighting it or denying it. It’s easier to push something away than to deal with it head-on.

Courtesy of Dani Fusaro

When it was becoming clear ‘chronic’ really, truly meant chronic, I finally began to realize how detrimental my mindset had been. It fostered anguish, false hope, lofty expectations, and caused a whole lot of heartbreak and disappointment when I couldn’t reach those expectations. I also decided waiting until I got better to get involved in things wasn’t a life I wanted to live. It wasn’t really living. I was simply existing.

I was trapped in that negative headspace for so long because I used to think if I accepted my illness, that meant I was giving up. With time, I’ve learned that couldn’t be further from the truth. You can accept where you are, give yourself grace for your limitations, and also work towards improving your stability and functioning simultaneously. They’re not mutually exclusive.

Now, I didn’t just wake up one day and suddenly accept everything as it was. Acceptance is more of a spectrum. There are days where I’m completely okay with how things are right now, and others where I just want to cry because I feel like I can’t take it anymore (which is totally okay!). I’m not sure I’ll ever get to a place where I don’t have those days where I’m just frustrated with everything sometimes. The goal is to have them less often.

Courtesy of Dani Fusaro

Overall, I do accept my conditions and I’ve stopped waiting until I get better to do things. I’ve stopped catering to the unknowns, and cater towards what I do know instead. I’m not trying to fight anything, I’m trying to carve out the best life I can for myself with what I’ve got in this very moment.

All we have is now, so why not cherish it?

This mindset has truly set me free. Consciously focusing on each symptom all the time is exhausting and often (with exceptions of course) pointless. My life isn’t entirely about my illness, it’s just something I have to manage. I’ve found myself happier, more content, and overall better off not spending so much of my limited energy focusing on what’s wrong. I manage what I need to and otherwise, go about my day in every way I can.

From here, I’ve been able to start rebuilding my life. The only issue was… I had NO clue what to do or where to start. I finally changed my mindset to WANTING to progress, but how? HOW do I get from living with my parents to being financially independent in my own apartment when I can’t work the career I spent 6 years of my life preparing for?

Courtesy of Dani Fusaro

I was lost. Sometimes, I felt like I was floating and other times, I felt like I was being crushed by a boulder. The uncertainty was terrifying and I wasn’t okay with it. I was really motivated some of the time and breaking down at other times because I felt like I would never be able to achieve everything I wanted.

One day, I still didn’t know what to do, but I wanted to do something – anything – so I started working on the continuing education credits I needed in order to become a certified athletic trainer again. I was finally making progress when I got the news I needed major neurosurgery. It wasn’t urgent, but my surgeon recommended I have it done as soon as possible.

I had a spinal fusion and decompression 2 months later. It was horrific. I woke up choking on my own saliva and in more pain than I could’ve possibly imagined. I completely lost the ability to swallow. I couldn’t keep down pills, drinks, or food. I was choking on everything. The staff at the hospital were horrific. They never ever checked on me unless we called them, they refused to help me do anything so my mom was helping me get up, walk, and go to the bathroom, and they made a lot of mistakes. It was traumatic, to say the least.

Courtesy of Dani Fusaro

2 weeks later, I was going to bed and my pain levels were really high. I took my pain medicine and tried to sleep, but couldn’t. I took another one per my doctor’s recommendation, and still, I couldn’t sleep. The pain continued to escalate. It was the middle of the night and I started calling the house phone and moaning for my mom to come help me. Not only was the pain worse, but I was scared. I was terrified something was really, really wrong with my fusion. I have never been in that much pain in my life.

We got in touch with the neurosurgeon, and he told us to go to the ER. By the time we got there, I was screaming in pain. Screaming. I’d never screamed before. I typically go silent when my pain is bad, but this was on such another level that it was like I couldn’t contain it. Luckily, it turned out to be nothing serious and with the right mixture of medications, I was able to go home the following day. Motivated by my horrifying experience, I didn’t want to wait to begin serving the chronic illness community anymore. I didn’t want to keep letting fear run my life. It was then I decided to start my business literally from my bed.

It was something I was thinking about doing for months and apparently, surgery was the push I needed to tell me, ‘What are you waiting for? Do it now.’

I was intimidated to start because I felt like I didn’t know what I was doing. I was afraid to fail and I felt like I needed more of a plan before I could start. Everyone has a plan, right? Right? Eventually, I realized no one knows what they’re doing. Not really. One day, you just start. So I did.

That’s when Days With Dani Nicole was born. I began by developing my brand, my website, and finishing up the paperwork I needed to finally get my physical therapy license. I worked on my blog content, my photography, and my editing skills. I taught myself how to use Squarespace after I hired my friend to build my website for me. I taught myself about marketing, working with brands on Instagram, and how to develop a coaching program. Overall, I wanted to create a safe place for everyone with a chronic condition to come and feel understood. To feel like they’re not alone, and to be inspired there’s more to this life than just illness. I wanted to show them joy can still be found in the darkest of places.

Courtesy of Dani Fusaro

I launched my blog a few months later, and I’m now a chronic illness mindset and lifestyle coach helping guide others to become the best version of themselves and to cultivate happiness and fulfillment in their own lives. Additionally, I accepted a per diem telehealth physical therapy job specializing in treating patients with debilitating chronic illnesses and I’m a disabled model. I have a medical device implanted in my chest. I used to be ashamed of it and I felt like I had to hide it. Now, I find it empowering. I don’t want anyone to ever feel ashamed of their medical devices, so my goal is to increase the visibility of people with medical devices in the fashion industry.

Right as my business was taking off, my health was deteriorating. I traveled back to my neurosurgeon and I was told I needed an urgent tethered cord release, another major neurosurgery in less than a year. It wasn’t completely unexpected news, but I felt a shock rush through me. What am I supposed to do with my clients and patients? How am I supposed to fill my brand contracts? Will my business recover after this?

I allowed myself to feel every emotion that came up, no matter how hard it felt to stay present, and then I worked on preparing for my time off. I closed down my business entirely for 6 weeks. I had initially only planned for 4 weeks, but recovery had been harder than expected.

Courtesy of Dani Fusaro

Now, I’m slowly building my business again. Starting up again has been scary and most of all, a slow process. I was nervous I wouldn’t have coaching clients and no brands would want to work with me, like I missed my window by having surgery or something.

Fortunately, that couldn’t be further from the truth. I have a lot of coaching applications, I just finished up a campaign for Savage X Fenty, a modeling agency is interested in signing with me, and my dream brand wants me to be a brand ambassador for them for the next 7 months.

My entire life is dedicated to giving back to a community that’s given so much to me. If you take anything from my story, take this: romanticize your life. Imagine your life is one long highlight reel and fall in love with the little things. Discover true joy just from sitting in a coffee shop, smile when sunshine touches your face, dance in the rain, find calm in a morning routine. Living with a chronic illness has added so many challenges to my life, but romanticizing my life has changed the course of my entire life. It’s helped me find joy when all I see is darkness. It set me free.”

Courtesy of Dani Fusaro

This story was submitted to Love What Matters by Dani Fusaro from New Jersey. You can follow their journey on Instagram, Facebook, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about chronic illness here: 

‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’

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