My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which... By Tatiana Corbitt3 min readBookmark for laterReactions0reactionsComments11 comments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have found a crucial need to pause and refresh... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments0 comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Grappling With the Possibility of Having Another Rare DiseaseMy 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... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
How My Therapist's Questions Help Me Manage Medical TraumaAs 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... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments7 comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to... By Tatiana Corbitt3 min readBookmark for laterReactions0reactionsComments3 comments
Community Conversations: Sharing Our Experiences With Rare DiseasesEvery rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our... By RareDisease.net Team2 min readBookmark for laterReactions0reactionsComments0 comments
What to Know About Support GroupsSupport 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... By Jenny Jones4 min readBookmark for laterReactions0reactionsComments4 comments
After a Rare Disease Diagnosis: My Avalanche of ComorbiditiesWhen I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how sick you are or how many symptoms you... By Annie-Danielle Grenier3 min readBookmark for laterReactions0reactionsComments1 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... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails, and nature, and I love being able to... By Natalie Abbott2 min readBookmark for laterReactions0reactionsComments0 comments
Do You Take Rare Disease Rest Days?As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the energy required to get things done. When... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Caregiving, Advocacy, and the Drive to Keep GoingIf you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or lost in one way or another? I often... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments1 comments
Disclosure in the WorkplaceWhen 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... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments8 comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?" She explained... By Gina Miller4 min readBookmark for laterReactions0reactionsComments9 comments
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of shame and anger within me. I asked myself... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments1 comments
Groin Stronger: How My Body Is Learning to Trust Itself AgainWhen I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a trilogy of articles. Or physical therapy. But what... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
Walking a Fine Line as a Squeaky Wheel: Communicating With DoctorsI 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... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments0 comments
When Rare Disease Needs Don't Make Sense to OthersLiving with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my experience, the social aspects of living with a... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments4 comments
'It Takes a Village...' Building a Supportive Rare Disease VillageWhen you become a parent, people say you will have a village that will be there for you every step of the way. And you believe them. Yet, for some... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments