Nicole of Virginia has been through a lot. With so many diagnoses she has found that doctors are often reluctant to take her on as a patient. But she can’t accept that, which is why Nicole is comitted to becoming an advocate. Here’s Nicole…
Hi there! My name is Nicole. I’m 24, and I live in Henrico, Virginia with my fiancé Teddy, and my pupper Dandy!
Let’s talk about invisible illness! I was diagnosed with Stevens-Johnson Syndrome (SJS) at the age of 14. SJS usually starts with a fever and sore throat and fatigue then turns into rashes and blisters. They can happen anywhere but often happen in the mouth. It’s completely invisible until it flares.
I was misdiagnosed with multiple psychological disorders at a young age and put on many medications. I had an allergic reaction to Tegretol (an anticonvulsant) and was hospitalized for three months. Due to how rare Stevens-Johnson syndrome is (and was at the time) the doctors were unaware how to treat it and what the long term effects would be.
FROM WELL TO UNWELL
Before being diagnosed with SJS, I was predominately healthy. However, shortly following my recovery from the episode of SJS, I began to notice a change. On a daily basis my body began to feel different. One thing turned into another and soon I was living with a host of health issues.
While I do face multiple health conditions, the ones I struggle with the most are my rare diseases. These are also my invisible illnesses.
It took me about 3 years to be diagnosed with Ehlers Danlos Syndrome (EDS, or vascularEDS to be exact). 
Along with EDS, I have POTS or Postural Orthostatic Tachycardia Syndrome for which I self-infuse 2 liters of saline through a PORTACATH daily. I also have cardiovascular disease for which I have had 5 major surgeries, and Mast Cell Activation Syndrome (MCAS). Not to be outdone, I also have gastroparesis which is a form of digestive tract paralysis (DTP), multiple autoimmune diseases, and more.
DISCRIMINATION
You may think, being 24 and disabled probably gets me a lot of looks from strangers and doctors. But no. Because so many of my diseases are invisible, no one knows at a glance that I am sick. They also don’t see that I struggle to live a normal lifestyle.
Because many of my conditions are poorly understood, many health care providers won’t take me on as a patient. By doing so, they refuse me access to
- testing to better understand my diseases
- treatments for those diseases
- advice on how to have a better quality of life
BECOMING AN ADVOCATE
The number one thing I’ve learned through this journey is to never let my voice go unheard.
As a patient, you have the right to treatment. I cannot stress enough how important it is to make sure you get the treatment you deserve…. Even if doing so means changing up your health care providers.
To help assert that right, always be one step ahead of your doctor. I have had to become my own advocate. I research and learn as much as I can before seeing my doctor. It helps me understand what we talk about better but also helps me decide what questions to prepare ahead of time.
Doctors all have their own style, so it never hurts to get a second opinion. It brings other ideas to the planning of care.
Lastly, always stay strong. Others can help you to be strong – we have support organizations and advocacy groups (like this one) that are here to help us.
I may have invisible illnesses, but my voice is bold and vibrant. Stand out and rise above!
From the Editor:
We met Nicole on Instagram. In fact, we meet a lot of people that way. Follow us there at https://www.instagram.com/patientsrising/.