Living with Chronic Illness: A Story on Choosing to Thrive
A hopeful story through the struggle of living with chronic illness. Dani from Days With Dani Nicole shares her personal experiences, plus coping strategies she’s used to survive and thrive.
Everyone always says that your life never turns out how you think it will. But, I wasn’t prepared for my life to change so drastically and quickly as early as it did.
In 2015 I was in my first year of graduate school for physical therapy. I was physically active and I planned to pursue working with high-level athletes when I finished. I’ve had health issues on and off for my entire life. So, when I started to get really run down during the spring, I didn’t think much of it.
I was in my fourth year of a rigorous, dual accelerated program for athletic training and physical therapy. So I assumed that I was simply exhausted from my schedule and workload.
At the end of the semester, I returned home where I had just under two months to rest and recover before I had to travel to another state for my first clinical rotation.
Seemingly out of nowhere, my entire health crashed.
I went from running a few miles at a time regularly to being nauseated, dizzy, and short-of-breath within ten minutes. I was fatigued, lightheaded, and I didn’t feel like myself.
My brain was foggy and I was having trouble remembering simple things.
My health continued to spiral and my symptoms worsened. I was in high amounts of pain, struggling to eat, passing out, and more.
I suffered through a long diagnostic process. Finally, I was diagnosed with a severe infection and virus initially, and then, later on, was diagnosed with generalized dysautonomia and postural orthostatic tachycardia syndrome.
The details of what they are don’t matter so much as the impact they had on me did.
I was having trouble staying upright, I was fighting the urge to blackout during clinicals and labs. I was in so much pain it was torture to sit through lectures. I would go to the bathroom to get sick during the middle of classes.
You’re probably wondering why I didn’t take time off.
Well, that’s for two reasons.
1. I was afraid that if I left school, I’d get too sick to go back and finish.
I knew it’d be easier to continue dragging myself through it than to stop and try to start again.
2. I was now a patient experiencing what it was like living undiagnosed, struggling to balance school my health, and wondering which direction to take.
I knew what an impact a competent physical therapist could have on a patient like me, so I was determined to finish no matter what to become that clinician for someone else.
Finishing graduate school and taking the board exam were the hardest things I’ve ever done in my life.A hopeful story through the struggle of living with chronic illness... #chronicillness #healing Click To Tweet
The Impact of Chronic Illness on my Quality of Life
Looking back, I have no idea how I managed it all.
I would run from class to an invasive lab test, and right back. I would organize my clinical rotation schedules around when I could do treatments and see doctors.
My condition only worsened as I continued to push myself, so the treatments I needed just kept piling on. I had what’s a peripherally inserted central catheter – PICC line – for the last year of school and clinical so that I could do intravenous treatments at home at my convenience.
After school, I yet again returned home.
I finally could take time off to fully focus on my health for what I thought would be six months. Fast-forward three years, and I’m 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 called Selective Antibody Deficiency.
At the beginning of all of this, I fought against it fully convinced that 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 as I wouldn’t do things or start projects because I was waiting until I “got better” first.
When it was becoming clear that “chronic” really, truly meant chronic, I 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.
Coping with Chronic Illness
I also realized that waiting until I got better to get involved in things wasn’t a life that I wanted to live, because it wasn’t really living.
My life wasn’t progressing because I wasn’t. I was trying my hardest to get better physically, but I needed to change my mindset.
I was trapped in that negative headspace for so long. I used to think that if I accepted my illness, that meant that I was giving up. Society tends to drive that one into people.
We grow up learning how to deal with short-term illnesses, but no one talks about the person living with chronic illness.
With time, I’ve learned that idea that was stuck in my head for so long couldn’t be further from the truth.
You can accept where you are.
Give yourself grace for your limitations.
And, work towards improving your stability and functioning simultaneously.
They’re not mutually exclusive.
In the wise words of Megan O’Rourke:
“The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears.”
Living with Chronic Illness: Coping Strategies
Learning how to accept my chronic illness was a process.
I didn’t just wake up one day and suddenly accept everything as it was. I went to therapy and slowly worked through a lot of it.
Acceptance is more of a spectrum.
There are days where I’m completely okay with how things are right now and other days where I want to cry because I feel like I can’t take it anymore and that’s okay!
I’m not sure that I’ll ever get to a place where I don’t have those days… where I’m frustrated with everything sometimes. However, the goal is to have them less often.
For the most part, I do accept my conditions and I’ve stopped waiting until I get better to do things.
- I don’t seek validation from others anymore – I’ve learned how to receive it from within myself.
- I’ve stopped catering to the unknowns, and cater to 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 at 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 that 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.
Related reading: 5 Fun Mindfulness Exercises for a Happy Life
From here, I’ve been able to start rebuilding my life with Chronic Illness.
This mindset allowed me to start a business literally from my bed two weeks after neurosurgery. Wild right?
It was something I was thinking about doing for months and I guess surgery was the final push that told me “What are you waiting for? Do it now.”
At the start, I was so scared 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. I didn’t want to make a mistake, and I didn’t want to make a huge commitment I couldn’t live up to.
Eventually, I realized that 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 started to develop my brand, my website and finishing up the paperwork I needed to finally get my physical therapy license.
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 that there’s more to this life than just illness.Living with #chronicillness: A story on choosing to survive and thrive. Click To Tweet
Joy can still be found in the darkest of places.
My community is where we focus on cultivating joy, happiness, and contentment rather than avoiding pain. We don’t avoid anything. We take it all stride and just do our best to find the light and support each other.
I launched my blog, and I’m now a chronic illness mindset and lifestyle coach. I help guide others to become the best version of themselves and to create happiness and fulfillment in their lives.
Additionally, I also just accepted a per diem telehealth physical therapy job, a consulting partnership with a physical therapy practice to expand their knowledge of Ehlers-Danlos Syndrome. I’m also a disabled model. As a model, my goal is to increase the visibility of people with medical devices in the fashion industry.
My life has been hard in a lot of ways, but it has also been incredible.
I’ll never take any of it for granted. I know what it’s like to be at the bottom, and now I know that you don’t have to stay there.
I’m not sure what my future holds, but for now, I’m grateful for my relative stability and the opportunities in front of me.
I live just outside of New York City. I’m a lover of all things coffee, style, and music. I started my business blogging and life coaching earlier this summer after spending a few years unable to work due to my health. I’ve been slowly rebuilding my life from scratch, and have finally started working per diem as a physical therapist and consulting for my genetic condition on top of my career. I’m also a disabled model. When I’m not working, you can find me exploring independent coffee shops, going to concerts, hanging out with friends, and binging Netflix! Connect with Dani on Instagram, Facebook and Pinterest.
Support To Help Those Living with Chronic Illness:
- 20 Quotes to Give You Strength When You’re Feeling Low
- How to Practice Daily Gratitude + Easy Gratitude Exercises
- 25 Positive Self Love Affirmations + PDF Worksheet
- 47 Best Self Care Sunday Ideas
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Just wanted to let you know that this article was a readers’ fav on my Twitter feed for the week and I’ve added it to my weekly roundup here. Keep up the great work! https://www.achronicvoice.com/2020/11/06/chronically-ill-238/
oh my gosh thank you so much!!! i’m so honored 🙂
Hi Sheryl – thanks so much for including in your round up!
Thank you for being so open, honest and vulnerable with your personal life journey. I can imagine that it isn’t easy to dig into those early days and the emotions that you were experiencing at the time. That being said, this post is incredibly powerful – especially for those that are trying to navigate their own journey with chronic illness.
Thank you so much for your unbelievably kind words, Britt. They mean so much to me, thank you.
This is a great story and reminder to switch up our mindset and cherish our health. Too often, we take good health for granted until we don’t have it any more. Thanks for sharing this inspirational piece.
That’s so right! Thank you for your kind words 🙂
Thanks for sharing your story. I have a family member who is going through something very similar. Great advice.
Wow! I cld have written this! That was my exact life and processes. It’s reassuring 2 hear from others. Though I’m sorry u went thru/are going thru this! Thank u for sharing! Brave and encouraging!
Aww thank you so much, I appreciate you! I hope you are doing well<3