Disability and (In)Visibility: Not All Disabilities Are Visible
This week was the start of Disability Pride Month. We’ve loved seeing posts from our Friends in the Fight sharing their own stories of disability, both the challenges and the pride! One theme that comes up a lot in lived experiences of disability is the nuances of visibility. What makes some disabilities visible? Whether from physical markers, […]
Myasthenia Gravis Awareness Month
June is Myasthenia Gravis Awareness Month. If you have never heard of MG, you are not alone! We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans. Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a […]
Body Image and Mental Health in the Time of Covid
Each year around June, I notice a smidge of angst rising in a small corner of my mind. The lingering chill of winter in New England is finally fading and, while I am here for it, the rising temperatures come with some baggage. Heat is my #1 trigger for symptoms, both from POTS and MCAS. […]
4 Tips to Foster Disability Inclusion in the Workplace
Diversity inclusion in the workplace can have benefits for all involved. Not only does it make our society more equitable, but having diverse perspectives – and listening to those voices – is good for business. We all bring different experiences and strengths and are mightier together™. Wanting to be more inclusive is wonderful, but hiring […]
Top 2 Digital Medication Organizers
When I was 24, horribly ill and desperate for a diagnosis, I went to my doctor seeking answers. She was very kind and listened politely but said, “You’re actually quite healthy.” Dumbstruck, I asked how she had come to that conclusion after hearing my symptoms. She replied, “Well, you’re not on any medications.” I can […]
5 Tips for Navigating Chronic Illness With Executive Function Challenges
I taught for years in alternative schools and found that too often the students found themselves in my programs because their needs were simply not being met in school. For many, it was because they didn’t quite know what their needs even were. Some were on the cusp of a medical diagnosis, were working through […]
Defining Treatment
My side project during this pandemic has been developing an app to help people with chronic illnesses make sense of their symptoms. In the app, you can track your symptoms, triggers, and treatments. One question I kept coming back to – what counts as a “treatment”? I think we typically limit our understanding of treatments […]
Compassion Fatigue
This morning, my breakfast was interrupted by a family member looking to vent to me about something that had kept him up all night. It was a topic I’d heard about on repeat for weeks. As I looked down at my half-eaten oatmeal, I found I didn’t have any patience or empathy for him. What […]
Best Tricks To Navigate Tube Feeding On the Go Like a Pro
With any chronic illness, going out can feel daunting. What if something happens that triggers my symptoms? What if I can’t take care of my body’s needs the way I can at home? Or what if I encounter people who don’t understand or actively make me feel worse about being sick or disabled? This can be a […]
Emily’s Care Team Tips
As we explored building up a care team last month, I wanted to take this opportunity to dive into a few of the treatment plans, therapies, and healing modalities that put my chronic illness stemming from Tick Borne Illness in full remission in 2022. I wanted to share these tips with you in case it aids you […]
5 Tips for Building An Awesome Caregiving Team
Learning to thrive with a chronic illness is a team effort; it’s not something you can simply do on your own. You’ll need to work on building a caregiving team of people supporting you throughout your journey. You may need specialists, non-traditional or non-medical practitioners, a primary care physician (PCP) to see the big picture, and […]
Sick at School
Most kids stay home from school when they feel sick. It’s comforting to not have to be around others, to let your brain unplug from the rigor of classes, and to just care for yourself — whatever that means in each moment. For those of us with chronic illnesses, we have to find a way […]