How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a...Reactions0reactionsComments3 comments
Mourning the Loss of the Old MeI’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn the loss of the old you, and how...Reactions0reactionsComments0 comments
6 Ways to Navigate Advocacy BurnoutAdvocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated comments. Sometimes, a deep fatigue sets in, and...Reactions0reactionsComments0 comments
Rare Versus Under-diagnosed DiseasesI have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease, and one is statistically under-diagnosed. Can you guess...Reactions0reactionsComments0 comments
Tips for Finding the Right DoctorFinding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help...Reactions0reactionsComments0 comments
New Year’s Resolutions and Rare DiseasesI'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make big goals that are not necessarily attainable, and...Reactions0reactionsComments0 comments
4 Tips for Communicating With Loved OnesIt can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing symptoms, fatigue, never-ending appointments with specialists, continuously adjusting...Reactions0reactionsComments0 comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...Reactions0reactionsComments0 comments
5 Changes I Would Like to See in the U.S. Healthcare SystemAs someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things I wish for in the American healthcare system...Reactions0reactionsComments4 comments
Planning a Vacation With a Rare DiseaseSummer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said than done for individuals with chronic illnesses. With...Reactions0reactionsComments2 comments
Misconceptions About My Rare DiseaseIt's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most people have never heard of. I think it's...Reactions0reactionsComments0 comments
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is thrown into the mix. However, being prepared for a potential emergency can make a nightmare of a situation...Reactions0reactionsComments2 comments
Yoga Doesn’t Cure My Autoimmune Diseases"Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please...Reactions0reactionsComments2 comments
5 Tips for Practicing Self-Care With a Rare DiseaseAs a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a day at the spa could wash away my...Reactions0reactionsComments0 comments
Tips for Navigating Gatherings With a Rare DiseaseNavigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few extra chronic conditions – and I find myself...Reactions0reactionsComments0 comments
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had never heard of my disease before, let alone...Reactions0reactionsComments0 comments
When a Low Probability Feels ScaryI’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac disease, an autoimmune condition related to the consumption...Reactions0reactionsComments1 comments
Finding a TherapistI’m a fan of therapy, but to be honest, I personally haven’t always found it to be helpful in the past. Perhaps I just hadn’t found the right therapist for...Reactions0reactionsComments0 comments
