Rare Disease InternationalAs a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
Recovering From Advocacy BurnoutAdvocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease advocacy burnout can include excessive fatigue, lack of... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
Art As Rare Disease Advocacy I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at first, I was genuinely confused. I didn't know... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments2 comments
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health. I live with narcolepsy... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Personal Grooming With a Rare DiseaseLiving with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list of things it impacts in my life is... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Nature Therapy Helps Me Live Better With a Rare DiseaseAccess to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it isn't always easy to safely access the outdoors... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Disease and Food Insecurity Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty for days or weeks at a time with... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can make treatment inaccessible for many. Many rare disease medications are expensive and subject to price... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
3 Ways I Combat BurnoutAs a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up with the bare minimum of daily tasks necessary... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn how to say "no" to people. This isn't... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments11 comments
5 Ways I Reduce Stress With a Rare DiseaseLiving with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through the trash compactor that the U.S. calls a... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Managing Stress and Chronic IllnessStress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with symptoms affecting your body, mood, and behavior. If... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Living an Authentic Life With a Rare DiseaseI was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting a bad flu, I started exhibiting narcolepsy symptoms... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
SSI and Medicaid: Moving to a Place Based on Healthcare"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this point, the Social Security agent kindly explained to... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
What to Expect During a Disability Hearing (In America)My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents from Social Security that might explain what to... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments3 comments
When Illness Calls: A Tale of One Rare DiseaseAs a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with narcolepsy is slow, with at least 2 scheduled... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Coping With Specialty Medication MayhemIf you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even once we find a treatment that works for... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
New Year… Same Old Rare DiseaseThe holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement is something I like to do every year... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
