Hey I am Kay and I deal with a few neurological conditions that have turned my life upside down. #FND and #TouretteSyndrome are both not as simple as they appear to be.
Dawn Golder

How the Stigma Around Functional Neurological Disorder Affects Me

I hear the words, but have no idea what they mean. “You have functional neurological disorder (FND). Go away and you will be better within 12 months.” Three years later, I’m still trying to understand FND; my symptoms have worsened to paralysis, slurred speech, weakness, dizziness, pain, blurred vision, seizures. I could go on, as the list is endless. Will I get any better? Who knows? I’ve seen so many neurologists and each one has a different take on FND. Most think it’s all “in my head” and I’m putting it on. Like I’m that good of an actress! They send me away with different medications which do not work; I just struggle with side effects, so I stop taking them. People ask what’s wrong. I try to explain it’s a problem with my nervous system sending and receiving signals, and I need to retrain my brain. So my friends and family think they are helping by telling me “you can do it, just think positively and you will walk or talk,” or “stop stressing and be more positive.” If only it were that simple. I try to smile, but deep inside I’m angry and hold back the tears as they don’t get it, they don’t understand. But how can they, when I don’t understand it either? The stigma associated with FND haunts me every day; I won’t go to the emergency room or the doctor when I’m at my worst for the fear of them looking down at me, and thinking I’m faking my symptoms. So my partner and I end up arguing… well, I try arguing with hand signals, which is probably a funny sight. Many a time I’ve broken down in tears when she has called the ambulance, but I can’t respond. I’m just locked in a body that doesn’t work. So I try to learn and research as much as I can about FND, to raise awareness to stop the stigma. Will I win this fight? Who knows, but I will keep on trying. Editor’s note: Please see a doctor before starting or stopping a medication. We want to hear your story. Become a Mighty contributor here . Image via contributor/Michelle Tuttle – MCT Photography

Jason Pittman

'The War for Kaleb:' Why I Create Comics About Anxiety

Mike and Addey, in “The War for Kaleb,” are every friend I’ve never talked to about my anxiety disorder. For those who do not know, “The War for Kaleb” is a comic book, I write, draw and self-publish about a young man named Kaleb who has a severe anxiety disorder in which he is medicated for. In the story Mike and Addey are his best friend and girlfriend respectively, and supporting characters. They aren’t front and center, but they are extremely important to the overall plot. Mike and Addey represent the people in our lives who are close, but who are left out of what is troubling people who have mental illness. Personally, my anxiety and trichotillomania (I pull hair from my face and eyebrows) are not something I usually discuss with others. For a long time, particularly the hair pulling, I believed I was the only one in the world who had these disorders. Over the years it became something I never really talked about, because of the usual reasons: people will think I’m a freak, or they won’t be interested or even care. Today I don’t talk about it, I guess out of force of habit. One thing I’ve learned through research is it is helpful, and can be beneficial in the healing process, if one talks about it to others. I found my own way. I received my first comic book, “Wolverine #6,” when I was 11 years old. I flipped through the pages, and I was in a world that I fully believe to this day can only be achieved through the art of sequential storytelling, or comic books. Of course, spending my more formative years in junior high through high school, reading comics wasn’t one of the most popular things in the world. It was the 90’s, and most people were more interested in parties, popularity and sports. I was interested in the worlds I was reading about. I wanted to make my own, and I wanted them to be comics, too. Flash forward to college. I was going to The School of Visual Arts in NYC, with a major in sequential art. I was in a big city alone. I mostly buried myself in the work of creating comics. At the time, I was going through some hardships in my personal life. I had lost a special person in my life, and one of my best friends, my Aunt Barbara, who had died in a car accident. Barbara also had severe anxiety. The world outside shut her down, and scared her. It’s almost as if her being became part of me after she died. Before her death, she would be the person I talked to every day over the phone. She would tell me that she was so proud of me for stepping out into a world that she was so afraid of, and pursuing the goal I set out to achieve, creating comics. The only problem was I was afraid of the world too. I had basically jumped into the deep end without knowing how to swim. I would not leave the apartment, it was extremely difficult to make friends and being in large groups of people made me horribly anxious. This became my stigmata which follows me to this very day. Years later, I began really feeling the strain of my anxiety. I was having my first panic attacks, my temper got the best of me and worst of all I began taking it out on my wife Desiree’. At the time I was living in Long Island, NY working at a warehouse job picking and packing orders to ship. It was a brainless job without any critical or analytical thinking. This allowed me time to spend in my head for eight to 10 hours a day yelling and arguing with myself about the things that were making me miserable about my life. Eventually the anger about my situation turned into focus, and I started seeing scenes in a comic book. These scenes turned into “The War for Kaleb.” At the time there were a handful of people who knew there was something upsetting me, but I would never talk to them about it. It was and is still not something I like to talk about with people. I talk about anxiety, sure, but only in a general sense of the disorder itself, but not usually the details of what is happening with me. When I thought up “The War for Kaleb,” it gave me the freedom to tell “my” story, without telling my story. After all, “Star Wars” arguably came to fruition partly because George Lucas didn’t want to work for his father in the family owned office supply store. J.R.R. Tolkien wrote “The Lord of The Rings” based on the atrocities he experienced serving a tour of duty in World War I for the British Army. Those stories became the proxies of their experiences without having to make themselves front and center. Art in my mind, has always been an outlet for truth. Art is the closest any living person will get to seeing the word through someone else’s eyes. Kaleb’s story is a semi-fantastical world that is seen through mine. Just like Kaleb, with anxiety, episodes can turn into visions of what we feel, rather than what it is. As far as Kaleb goes he has a hard time separating the two. What’s worse is he has an even harder time telling the people he cares about what is going on. Mike and Addey are left in the wake of confusion with what they don’t know or possibly understand. Through my story, I can give the “Mikes” and “Addeys” in my life eyes to help understand. And for those who also struggle with anxiety, I can give them a space, and world to enter, where they can hopefully put into perspective what it is they are going through. In “The War for Kaleb” I use the tool of two superheroes to express this world of anxiety. There is a light hero and a dark hero. They are a purely visual, metaphorical representation of what people don’t see, when one is having an episode, brought on by anxiety. I chose the superhero motif because superheroes are what created my desire to create stories with comics. I’ve also always been fascinated by the doppelganger superhero; a dark version of the hero that represents light and good. It symbolizes the push and pull of anxiety, and was just one way to show how an episode of anxiety can play out. Creating “The War for Kaleb” was important in the sense that through art and storytelling, I could show people not only what it is, but more importantly what it feels like to struggle with anxiety. Kaleb in the story is my proxy. The superheroes that follow him are his proxy. And probably most importantly of all, Mike and Addey are the proxies of all the people I have a difficult time talking to about my disorder. The story also acts as a vehicle for others to see that no, they are not alone in the world dealing with their own disorders. There are plenty of people, myself included, who are here to connect with, and let them know, “We see things just like you.” Sitting down to write and draw these stories are the letters to the people I care about, and the world I want so desperately to connect with. To read “The War for Kaleb, Part One,” visit Jason’s site. Click here to shop at his store. We want to hear your story. Become a Mighty contributor here . Image via Jason Pittman

Heather Connor

Thank You Letter to Stranger Who Judged Me as a Parent

We were exhausted — tired and emotionally raw. Our little boy was finally stable and home from the hospital. He was in so much pain; I was actually surprised and relieved he’d finally fallen asleep. He was almost 2 years old and had given us quite the scare. His feet seemed to stop working, and he vomited relentlessly until it became red and streaked with blood. He had no fever and every test had yielded normal results. His discharge papers read, “Undiagnosed. Suspected underlying neurological condition.” We were given referrals to neurology as well as some prescriptions and sent home. It was a beautiful summer day and our little boy slept in the carrier as we walked to the pharmacy to fill his prescriptions. Standing on the corner waiting for the light to change, I became so lost in thought pondering what could be wrong with my precious boy that I almost didn’t hear her. My husband’s abrupt “Excuse me!?” snapped me out of it. I looked up to see the whole street corner staring at us. I felt immediate confusion by the appalled look on the woman’s face. What happened? Did we do something wrong? I could think of nothing. We were just standing there waiting for the light. She had aggressive body language, matched only by the angry look on my husband’s face. “I said he’s old enough to walk,” she said gesturing to my child sleeping soundly against my husband’s chest. I stood looking at her, my mouth literally gaping. Did she really just say that? People were staring at us, waiting to hear what we had to say. I instantly became self-conscience. I wondered if everyone felt this way? I spent the last week in a nightmare and had just been told my sweet child probably has a mysterious neurological disorder. Now I felt like the whole world was judging me for it. We just stood there silent. It was as if we both decided simultaneously she was not worth engaging. My husband’s jaw was tight, and I could tell he was upset, but he turned his head and ignored her. But apparently our child in a carrier was too much for the woman to take. She reached out and tapped my husband on the shoulder forcing him to acknowledge her. “You are not doing him any favors treating him like that,” she snapped. “He should be walking!” I was truly caught off guard. I was humiliated as I looked around at all the people starting at us. Was she really questioning us as parents!? Especially after all we’d been through? Could this one act of carrying our sick son be enough to announce to the whole world we were not doing right by him? I felt so judged, isolated and misunderstood. It made me feel all alone and inadequate. I wanted to do more for him, but how could I? I was giving him everything I could. Standing on this corner looking at this woman, I tried to think of something clever to say to make her understand. But, in my emotionally exhausted state, the only thing that came was stunned silence. My husband, however, was not as lost for words. He said to her softly, yet firmly, “Not that it’s any of your business, but he has some neurological issues and was just released from the hospital earlier today. So no, he can’t walk right now.” There was an audible gasp amongst the audience. No one expected this response, and all eyes turned to the woman to hear what she would say next. She was stunned. Her indignant self-righteousness was fading but not gone. She looked at my husband, still holding her aggressive posture and said flippantly, “Well, I didn’t know that.” This response surprised me. It was as if her lack of knowledge made her actions justifiable. “No, you didn’t,” my husband retorted. “And you may want to consider that fact the next time you feel the urge to walk up to parents and publicly judge and insult them. We are doing everything possible for our sick child. The only one not doing him any favors is you.” And with that she turned around and ran away. This short interaction has had a lasting impression on me. And not just because of her audacity but because I can relate to what she was thinking. While I’ve never walked up to a mom and criticized her, I have thought things to myself not too dissimilar, and it made me feel awful. Here I was in an extraordinary situation wishing others would understand and I was guilty of thinking the same things. My husband’s words hit me like a hammer. I’d silently judged without stopping to think that maybe I didn’t have all the information. The thought that I could have dismissed a mother in desperate need of support, a mother like myself, deeply bothered me. It was not too long after, I witnessed a scene in the cereal aisle of the grocery store. A woman was standing there watching her son melt down, doing nothing to control the situation. He was maybe 4 and was sitting on the floor screaming at the top of his lungs with his hands over his ears rocking back and fourth. As she stood there watching, a man walked by and scoffed at her. He was trying to maneuver his cart around the screaming child. He said to her, “Lady, control your kid. People are trying to shop.”A week ago I would probably be thinking something like, “Why isn’t she removing him from the store?” But just coming off my public judgment on the street corner, I decided to change my approach of silent disapproval. I too had something to say to her. So I walked up to her. “Don’t worry,” I said. “This was my whole day yesterday. Gotta love life with toddlers.” The woman said nothing. “Honestly,” I continued, “It happens to all of us. Don’t worry about it.” I gestured to the man who was now further down the aisle. The woman broke into tears. She explained that her son was recently diagnosed with autism and he would melt down for unknown reasons. Right now, in the cereal aisle, she had no idea what triggered the meltdown or what to do about it. She did know that touching him or attempting to move him would only upset him more. This woman was in a difficult situation and doing everything she could. Sadly she was only met with judgment. As I reached for my box of Cheerios, I told her to hang in there. I reassured her she was doing a good job and was a good mother. To my surprise she grabbed me, hugged me and said, “I really needed to hear that today.” Her words hit my heart and echoed what I’ve felt so many times before. Over the years I continue to think back to those two events, and they have been forever burned into my soul. Because of these two random encounters I feel compelled to offer words of encouragement to parents who I catch publicly struggling. I force myself to smile approvingly at parents who seem to be doing the odd and unconventional, and I am constantly surprised. I’ve met a wide range of unexpected and extraordinary circumstances. The 8-year-old girl who was saying mean things at her mom in the kitchen store was angry that her dad had just been deployed to war. The mom who was indulging her son with candy every time he fussed was fighting cancer and had no energy for a battle of wills. The dad who was on his phone at the park while his son begged to be pushed on the swing had just lost his mother. In years past, I might have silently disapproved of these interactions. But because of one mean stranger I was able to offer words of encouragement, load a tired cancer patient’s car for her and push a grieving man’s son on the swing. The more extraordinary situations I uncover, the more I realize at one time or another we all fight something extraordinary. We all fight things that make us feel alone and desperate, and desperate times call for desperate measures. When these things happen, we do what we must to survive. Sometimes that means our parenting choices look strange. These are the times when the world feels harsh, but we need it to be kind. I truly believe if anyone should have compassion for parents, it’s other parents. What we really need is support, not judgment. So, to the random lady on street, I can’t thank you enough for making me realize this. You hurt me and embarrassed me. But, you made me realize I was guilty of forgetting that my battle is not an isolated one. You reminded me we all struggle and none of us have the whole picture. You changed how I see others and how I approach them. You connected me to my community and gave me compassion for the unconventional. But mostly, you opened my eyes and showed me something extraordinary. A version of this post originally appeared on Raising Dystonia.

Community Voices

2 Steps Forward 6 Steps Backwards

Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

2 steps forward 6 steps back.

Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

2 steps forward 6 steps back.

It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

2 steps forward 6 steps back.

Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

2 steps forward 6 steps back

It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

2 steps forward 6 steps back.

Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

#FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

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Lucy Clapham

Tourette Syndrome: Things I Wish People Knew

I have lived with Tourette syndrome (TS) for most of my life, but I was only diagnosed when I was 17. Technically I was told when I was 15, but I laughed it off due to my own ignorance about the condition. So for the benefit of those who are facing a TS diagnosis themselves or are just interested, let me tell you some lesser-known things about TS. 1. There is more to Tourette than swearing. I cannot stress this enough. Although coprolalia, the fancy word for involuntary swearing, can be a symptom, it is surprisingly rarer than the majority of television shows would have you believe. Only an estimated 10 to 15 percent of people with Tourette syndrome swear involuntarily, me being one of them. 2. We can’t “just stop it.” If only it was that easy! Yes, I know it’s an annoying noise and this really isn’t the best place to be making said noise, but I literally cannot stop! Many of us get what is known as a premonitory sensation or urge that can feel like an itch inside the body or a small jolt of electricity. Some of us can, and do, learn to suppress our tics, but it can be hard for us to do this. To help you understand, try not to blink. That horrid feeling that builds up in the back of your eyes — that’s what we get all over our bodies! Just as you will need to blink, we will eventually need to tic, and it can sometimes make it worse. So don’t ask us to suppress our tics! 3. It can be painful. Although many tics are harmless, some can cause either minor or severe pain. This can be due to repetitive movements, punching or kicking things, biting and scratching ourselves and in my case, even running myself into walls at breakneck speed. If I injure one of my joints, my TS will focus on the injured limb and I won’t stop twisting it. 4. Some people have tic “storms” or fits. Some of my friends in the Tourette community and I suffer from what we call “tic fits” or “storms” where we completely lose control of our bodies to tics. This can be scary and painful for us, and I believe it’s a poorly researched part of TS by professionals. 5. Laughing is fine… sometimes. While we do have a sense of humor, you really need to know when it’s OK to laugh and when it isn’t. Generally speaking, my rule is “If I’m laughing, you may laugh, too.” It is extremely difficult not to laugh when I’ve shouted “Donkey Kong dropkicked a tortoise!” at random. If I am obviously not happy, don’t laugh! Always ask the individual with TS whether laughing is OK and when. 6. It often comes with “added extras.” Many people don’t just have TS. Quite a lot of us also have obsessive compulsive disorder, attention deficit hyperactivity disorder, autistic spectrum disorder and various other issues, often to do with learning. I couldn’t write until I was 12 years old; others may struggle with reading or math. 7. Some of us don’t grow out of it. Although a lot of doctors say that most people grow out of TS at around 18 years old, this isn’t always the case and about 5 to 10 percent of people with TS continue to have symptoms as adults. 8. Some activities can calm tics. Some of us find that our tics reduce or disappear completely when we are engaged in certain activities, such as playing a musical instrument, jogging or other forms of exercise, playing computer games or spending time with an animal. Everyone is different in this respect, and I expect some of us don’t have a special activity, but some do. For me, it’s playing the guitar. 9. Pointing out tics can make them worse. I can promise you that we are aware we are making noise or doing a strange movement. Pointing this out not only causes more embarrassment, but, for me, can also make me feel more like I need to do the tic. My dad once thought it would be helpful to point out that I was squeaking, but instead of stopping it, I could no longer control it! 10. There is no cure. There is no cure at this moment. The only options for treatment include medications or, if the TS is severe, deep brain stimulation. Neither is a cure for TS but may reduce the severity of the symptoms. I don’t take medication for my TS because the side effects outweigh the benefits for me.

Community Voices


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Sunshine 🌞

<p>Sunshine 🌞</p>
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Go to foods...

<p>Go to foods...</p>
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