Living with Dystonia: Tom’s Story

Guest post: What It’s like Living with Dystonia by Tom Seaman I have lived with chronic pain from dystonia for almost 20 years. Since it is often very difficult for others to understand what it feels like, I want to provide some information about what it is, how it feels, and how living with dystonia […]

Living with Trigeminal Neuralgia: Liz’s Story

Guest post: What It’s like Living with Trigeminal Neuralgia by Liz I live with a facial pain condition called trigeminal neuralgia. I have other pain issues too including a back problem which resulted in me having to take early retirement when I was twenty-eight. My back pain is extremely debilitating, but trigeminal neuralgia is just […]

Living with Hereditary Lymphedema: Jordyn’s Story

Guest post: What It’s like Living with Hereditary Lymphedema by Jordyn. You can find Jordyn’s previous guest post on Erythromelalgia here. Hello again! My name is Jordyn and I’m chronically ill. I actually have many different chronic illnesses, but I thought that today we would talk about one of the rarer ones. I am living […]

Living with Mitochondrial Disease: Kelcie’s Story

Guest post: What It’s like Living with Mitochondrial Disease by Kelcie Miller-Anderson My name is Kelcie Miller-Anderson, a twenty-something social entrepreneur and scientist from Canada. I also have several rare diseases. 3 to be exact, but the one that is most significant and impacts my life daily is called Mitochondrial Disease. What Is Mitochondrial Disease? […]

Living with Functional Neurological Disorder (FND): My Story

After so many guest posts for my What It’s Like Living With series, I thought I’d contribute myself and share what it’s like living with Functional Neurological Disorder (FND). It’s been 2.5 years but I finally know what’s wrong with me (part of it, at least) and why it happened. I have a chronic illness […]

Living with Erythromelalgia: Jordyn’s Story

Guest post: What It’s like Living with Erythromelalgia by Jordyn Hi, my name is Jordyn and I have many different chronic illnesses. However today, I want to talk about one of the rarer ones in hopes of bringing awareness to it. I am living with Erythromelalgia and no, I don’t know how to pronounce it […]

Living with Stiff Person Syndrome: Amber’s Story

Guest post: What It’s like Living with Stiff Person Syndrome by Amber Hello. My name is Amber and I am excited to be able to share part of my story with you. My husband Shawn and l live in the beautiful state of Oregon. I love photography, all things vintage, thrifting, kayaking, all things tea […]

Living with Fibromyalgia: Stacey’s Story

Guest post: What It’s like Living with Fibromyalgia by Stacey Chapman I awoke at 4:30 am, drenched in sweat. I quickly changed out of my soaking wet clothes and began to shiver. Layer after layer I dressed in and tried quickly getting back into bed. I could subtly feel the nausea and body pain sinking […]

Living with Suspected Endometriosis: Coralle’s Story

Guest post: What It’s like Living with Suspected Endometriosis by Coralle. My name is Coralle and I have chronic pelvic pain due to suspected endometriosis. If you’re not sure what this is, it’s a condition in which the lining of the womb starts to grow outside of the womb. Although I am yet to be […]

Living with Multiple Sclerosis: Karen’s Story

Guest post: What It’s like Living with Multiple Sclerosis by Karen Lanzetta Intro I am Karen Lanzetta and I am living with Multiple Sclerosis, a neurological disease that attacks the myelin sheath (which helps speed nerve conduction) surrounding all neurons in the nervous system. I have had it for decades, but wasn’t diagnosed till Halloween […]