Jenny Jones

More likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient, telling you or implying that your condition isn't...

I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional...

I have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our shared rare diseases, familial adenomatous polyposis (FAP), is...

I have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall into such a mindset when living with a...

When I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is empathetic and flexible. In encounters with people who...

As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations and at various levels of government. In my...

Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells us we must act now, not later —...

Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...

My mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision issues. She was ultimately diagnosed with retinal dystrophy...

As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are unrealistic or harmful. To help me reevaluate my...

Support groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare disease, a specific health condition, or even mental...

When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do. Perhaps it's not necessary, but...

I once told someone about their healthcare, "You have to be the squeaky wheel." Later, I was corrected by a provider with the disclaimer that being a squeaky wheel can...

My rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress disorder (PTSD). I changed from an outgoing, carefree...

Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am reminded by my own therapists that when we...

As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for...

I have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me)...

Most of us are familiar with the term "elevator pitch." An elevator pitch is sharing one's story with another person and requesting action in approximately 5 minutes or less. But...

"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain a wheelchair and utilize it to participate in...

Whenever I encounter new medical providers at any level of care, they are often surprised to discover that I have a do-not-resuscitate (DNR) order and I’m not even age 40...