I'm a mom of three that has a burning passion for writing and activism. I'm currently a copywriter for Habit Nest, but I'm on Vocal to branch out further and put more of my own personal work out there. I hope you enjoy them!
The Ropes That Bind Us
Sybil twisted and tightened the rope wrapped around her wrists. The rough, frayed edges made her skin itch and crawl. As she sat in the middle of the wooden floor, the ancient bones of the house creaked. The wind blew like labored breaths, wheezing and scratching, full of sand. Spidery tendrils of smoke began to twist around her, capturing her in a web that she knew she would never escape. As the fire began to lick her skin, a tear escaped her darkened gray eyes, stinging her cracked lips, and with it freely flowed the remainder of her lucidity.
The Impact of Healthcare Pricing & Transparency on the Rare Disease Community
Imagine this: you’ve just arrived back home from running errands and decide to check the mail, whereupon you find that you’ve received an outrageous bill for your brief visit to the ER recently. Sound familiar? Almost every adult has faced this at some point, whether it be for themselves or a family member, but it can be especially common and distressing among those in the rare disease community.
Emergency Preparedness: Creating a Disability-Inclusive Emergency Plan
Emergency preparedness is an important topic for anyone - your average person should have a set plan as to what to do during a natural or manmade disaster, what to take if ordered to evacuate, and have a backup plan for sheltering in place. However, people with chronic health conditions need an emergency preparedness strategy that maps what to do during a flare, what to take to the emergency room, and where to store backup medication and an extra set of clothes just in case. The truth of the matter is that having an emergency preparedness plan can (and often does) save lives!
The Specious Reason Behind the Lack of Diversity, Equity, and Inclusion Training in the Workplace
In just the last few years, there’s been an increasing amount of attention drawn to Diversity, Equity, and Inclusion (DEI) initiatives in workplaces and communities – or, more specifically, the lack of those initiatives.
The Disability Spectrum & Why It Matters
Disability is often seen as a binary “check yes or no” matter - either you’re disabled or you’re not. This simply isn’t the case, and recognizing that there are so many different variations of disabilities - even for one individual from day to day - is an important step toward cultivating a world with true inclusivity, equity, and accessibility.
- Top Story - May 2022
The Harms of Being Labeled a 'Difficult' PatientTop Story - May 2022
Imagine you’ve just been handed a complete copy of your medical records. As you’re skimming it, you find that one of your physicians left a note in your chart stating that you were difficult and non-compliant during one of your appointments. “That can’t be right,” you think as you try to remember what might have gone wrong during that appointment. There was that one time you refused a medication you didn’t feel comfortable taking, or maybe it was the time that you cried because the doctor suggested that it was all in your head… but surely that wasn’t enough to warrant a note like that, right?
Are Mobile Healthcare Apps Jeopardizing Your Privacy?
For many people, it doesn’t come as much of a surprise that any online technology carries massive risks to our privacy. In fact, it has long been a topic covered in documentaries, debates, and even fictional movies. The data our phones collect through various apps and social media sites tracks hundreds of different data points that are then analyzed or sold to various marketing companies in order for them to better understand you – at least enough to tailor their ads to you for maximum effectiveness. However, this invasive strategy may also be being exploited to gather priceless information about our health.
Dating & Healthy Relationships for People with Disabilities
Many people mistakenly believe that people with disabilities don’t desire sex and relationships, or that they are entirely unable to do so. This is, of course, a complete myth. People living with disabilities are human beings with human desires, needs, and preferences. Living with a disability does not remove the person from the very human elements of desiring a healthy social life.
Value Your Rare
As members of the rare disease community, it's easy to feel isolated, unheard, invisible and exploited. But the truth is: everyone is rare. All around the world, the people of the rare disease community have united and as a result, we are no longer isolated, ignored, or invisible. It is time that we recognize the value of our collective lived experiences and demand stakeholdership throughout the rare disease ecosystem. The rare disease community has awakened; and through this awakening, the people around the world are empowered to value their stories, experiences, and insights.
5 Types of Doctors You Encounter When You Live with a Chronic Illness
Throughout the years, we all encounter a variety of doctors. Some create traumatic experiences for us, while others feel like angels in the midst of our personal hell. Some leave us with more questions, while others answer the questions of a lifetime. We spend a ridiculous amount of time trying to differentiate and find the correct care team to best suit our needs. No matter where you’re at in your chronic illness journey, you’re bound to have come across most (if not all) of these doctors.
When My Doctor Told My Husband My Pain Must Be 'Psychological in Nature'
It’s no secret among the chronic and invisible illness community that we often have people in our lives that don’t believe us. From doctors, to friends, to even family members that have known you all your life. A common ideal among us is that sometimes the pain of not being believed can be more unbearable than the conditions we live with. Many of us go years without a diagnosis or don’t have a strong support system to keep us going day-to-day.