Disabled Model Opens Up About Her Chronic Illness & Disability

Getting to Know Danielle

Could you tell us a little about yourself?
I’m a physical therapist, chronic illness mindset and lifestyle coach, and a disabled model. I’m the founder and CEO of ‘Days with Dani Nicole’, where I show others how I’m creating a life I’m proud of while managing complex health. I also work as a per diem telehealth physical therapist specializing in treating patients with complex, debilitating chronic illnesses. Outside of that, I’m a disabled model. I have a medical device implanted in my chest and it’s my goal to increase the visibility of people with medical devices in the fashion industry to one day normalize “different” bodies.

An interesting fact about you?
I used to promote bands for a couple record labels in college!

Danielle’s Mental Health Story

Can you talk about your chronic illness and your disability, and how living with them has impacted your mental health?
I have a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS) and a few comorbidities caused by it. I’ve had it my entire life but I didn’t become disabled by it until about 6-7 years ago. The drastic change in my physical health forced me to re-evaluate my entire life, mental health included.

I also developed significant anxiety and PTSD as a result of some of the medical traumas I’ve experienced. I had to do an intensive form of therapy called eye movement desensitization and reprocessing (EMDR) to reduce my body’s responses to my traumatic memories. EMDR was very helpful, but I still needed medication and regular therapy on top of that.

I’m happy to say that I’m doing way better now and my mental health is stronger than ever. All of that taught me that your mental health is the absolute most important thing, even more so than physical health. I’ve learned to set hard boundaries and to recognize when those symptoms start popping again so I can slow down and make sure I’m taking care of myself.

What are some of the biggest challenges of living with a chronic illness and/or disability?
There’re a few really big challenges. The inaccessibility of our society is definitely the biggest one. My health crashed when I was in graduate school. I was killing myself trying to get through it and I was barely making it because I needed accommodations, but I didn’t know what to ask for at the time. I even built up the courage to speak with disability services and they had nothing to offer me.

Outside of school, it’s miserable trying to travel or get around anywhere. The majority of the subways in New York City are inaccessible, or if they are, the elevators are often broken. I struggle to stand for long periods of time and often need a place to sit.And then there’s the workforce which is extremely inaccessible due to lack of flexibility for sick days or medical appointments, refusal for work from home jobs, and judgments that sick and disabled individuals are somehow less capable than their healthy counterparts.

“They’d label me as a faker or an exaggerator because how my chronic illness impacts me doesn’t fit with their idea of what a sick person should look and act like.”

The other big challenge is how disability is portrayed in our society. We’re taught a very narrow view of what it’s like to be disabled, and chronic illness pretty much isn’t taught at all.

People think that because I’m young and don’t “look” sick, that I’m completely healthy. I’ve had close friends, family members, professors, and doctors flat out not believe me. They’d label me as a faker or an exaggerator because how my chronic illness impacts me doesn’t fit with their idea of what a sick person should look and act like.I’ve lost count of how many times strangers have made rude comments or given me mean looks when they see me using a wheelchair or a handicapped parking space. I’ve had to do a lot of educating to those around me to help redefine their views of what disability is and can be.

Additionally, lack of disability representation is a challenge. We’re rarely included in intersectional activism. If we are, it’s often used as “inspiration porn” to remind healthy people that they should be grateful for all they have.

There are many problems with this. For one, disabled individuals aren’t inspirational just for living their lives… That’s nonsensical. The other facet of that is the narrative that disability and sickness are bad. Like somehow by being sick or disabled, our lives are worth less or aren’t worth living. My community is vibrant, hard-working, resilient, and badass. I wish society could see that.

Going off of the last one, people struggle to understand that people can be sick or disabled and happy at the same time. Chronic illness and disability of course bring about unique challenges, and our lives are harder than non-disabled people in some ways, but we have every right to live happy and fulfilled lives as everyone else does.

Better Me, Better Life

What is your support system? How have they helped you?
I’m very lucky and privileged to have a diverse and strong support system. My family is number one. Besides the financial help, they’re there for me in every way possible.

My mom comes with me to the important doctors’ visits, we’ve traveled out-of-state for healthcare numerous times, and my dad chips in by cooking and doing any little thing he can think of to make my life easier. My siblings live across the country, but when we get together, they find ways to make sure I’m included and do all they can to help me feel as well as possible.

As far as friends go, I have incredible non-disabled friends as well as disabled and chronically ill friends I met through Instagram. Some of the friendships were bumpy at times, but once I learned how to communicate more effectively, those friendships have been stronger than ever. They do all they can to be there for me and try to understand what I’m going through.

Lastly, I met some of my best friends through Instagram! A few years ago, I started getting involved in the chronic illness and disability community online because I wanted to talk to people who could truly understand all that I was facing. I’m fortunate enough to have many powerful friendships that have changed my life for the better.

Danielle’s Wellbeing Recipe

What does mental health wellness mean to you?
Mental health wellness means balance to me. It consists of doing fulfilling activities to fill up my cup like facetiming friends or creating content as well as slowing down and resting to ensure I’m not burning myself out. Mental health wellness is my number one priority at all times.

As someone who wears so many hats, how do you balance life and emotional wellbeing? To avoid physical and/or mental exhaustion?
Balancing my life and emotional wellbeing takes a lot of planning and work! I take care of myself through both daily practices as well as hard boundaries.

I have a very long morning routine made up of gratitude journaling, regular journaling, reading, and some mindless TV so my body has time to wake up and get ready for the day. I struggle the most in the morning before my medications kick in, so I practically never schedule any early appointments. I know that I’m not functional enough to show up as my best self, so I try really hard to avoid early obligations.

In the evenings, I wind down by gratitude journaling, regular journaling, and reading to help my mind and body relax before bed. I also work from what I like to call my “soft office” – my bed!

Some days my body is struggling more than others, so instead of trying to force it to do more than it’s able, I work with it to get done what I can.

To All of You Who’re Reading

Could you offer us a final word of wisdom to our readers who are struggling with a chronic illness and/or mental health?
If you’re struggling, lean on your community. Build up the courage to reach out to other people with the same diagnosis or disability as you so you can get support from people who truly get it.

My heart breaks for all of you walking this path alone, but it doesn’t have to stay that way forever. Your community is here for you and you will find your people.

Life might look bleak and miserable now, but I promise you that better days are coming. You can live a life you’re proud of alongside your complex health.

Here’s where you can find Danielle

Blog: www.dayswithdaninicole.com

Instagram: www.instagram.com/dayswithdaninicole

Tiktok: @dayswithdaninicole

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