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Can't Stop: Things I Worry About as Someone With Tourette's Syndrome


I used to be afraid of the police. I’ve had this dream in the last few nights of police coming to where I live because of my yelling. I have Tourette syndrome and I yell “stop.” It’s a tic. It’s a tic I can only control for so long; I hold it back a lot. I tic most at home and in the the car. Stop!

Yelling “stop!” is a great way to capture someone’s attention. Stop what? Are you OK? For me, when I’m holding back a tic, not yelling “stop” is a great way to capture my own attention. Holding back gives a sense of tension, anxiety. It’s physical, psychological, and absolutely real. I can hold back, but I can’t stop.

 People like to joke about Tourette as though it is some kind of marvelous scheme to get away with cursing at other people. It’s not. Having Tourette syndrome can feel like an everlasting fight you cannot win. Your opponent is yourself. The more you fight off the urge to yell, to squeak, to bark, to twitch, to do any number of these random tics the more the tension grows.

On the flip side, the more you give in the more isolated you may become. I have learned to “rock” my tics and to gain both others’ and my own acceptance. It has been a fight. Fighting is exhausting. Not fighting is exhausting. I can’t stop. So what if the police were to intervene? It’s not illegal to yell “stop.”

In my dream I handed them my ID card. I carry it in my wallet. The front gives a description of TS. On the back it reads “My condition is covered by the Americans with Disabilities Act.” That is key. Under the ADA I can not be discriminated against for my tics. I can not be arrested for a tic; I can not be forced to leave a location because of a tic. Any school is required to provide me “reasonable accommodations” if I request, as is my work — if I were to need them.

At one time, it was very hard for me to advocate for myself like this. It felt like an excuse. I knew I could only hold back so long but still I wondered, if I am able to keep this on the quiet so many hours some days, why can’t I do the same just a few more? How is it that I can not control my own lips? I even questioned if it’s fair to call this a disability. But it is. It is a neuro-psychological disability. Maybe it would be better called a disability of free will. I can’t stop. Can’t fight myself. But I can fight the misunderstandings.

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Thinkstock photo via John Howard.

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My Unexpected Descent Into the Mental Health System


Editor’s note:  This piece is based on an individual’s experience. Please see a doctor before starting or stopping a medication.

I didn’t get into the mental health system the way most psychiatric survivors do. However, once I was in, I ended up injured because of it. I have Tourette Syndrome (TS), a neurological disorder that causes involuntary movements and sounds called “tics.” In 2010, at the age of 17, when my tics suddenly became debilitating, my family started taking me to one specialist after another. No one could explain the cause for the increase in the severity of my tics. We contacted the Tourette Association of America and they gave us a list of recommended physicians to seek treatment. The neurologist who treated me was considered the top in her field and a prestigious movement disorder researcher, so after months of waiting and struggling, we thought I was finally going to get the help I needed.

At my first appointment, the neurologist prescribed Abilify off-label to help manage my tics. My family and I were new to the “medication world” and so we trusted her knowledge. It was never explained to us that Abilify was an antipsychotic, nor would we have expected one to be prescribed to treat tics. We were never properly informed of the risks involved or the fact that the drug can be addictive.

The drug therapy went terribly wrong. I quickly began to experience horrific side effects that became so severe I was not able to leave my house. By the second week of taking Abilify, I had all the typical side effects of an antipsychotic and then some. I was shocked by how quickly it completely deteriorated my health. I was walking around in a drug haze looking like a zombie. I started to experience extreme restlessness, not realizing I was already in the early stages of akathisia. I lost my ability to experience any pleasure from the activities I normally enjoyed. I now realize I was also in the early stages of tardive dyskinesia, as I had developed tremors and hyperkinetic movements. Even after reporting these movements to the doctor, she did not pick up on the fact that I was developing tardive dyskinesia.

Almost every night, I had a nightmare that was so horrifying I could have never imagined it was even humanly possible to have a dream this intense. Every waking hour, I was forced to constantly think about my breathing. It felt as if my lungs were no longer automatic and had become “manual.” I lost my ability to communicate so those around me were unaware of this drug-induced hell that was unfolding.

From an outside perspective, my parents were under the illusion that my tics were being suppressed, when in reality, I was simply suffering in silence with the majority of my side effects. Though my parents knew that the medication was not improving my quality of life, they could have never imagined how damaging the side effects truly were!

The doctor’s treatment literally made me so ill that I was unable to come to her for my appointments anymore, so she agreed to treat me via email. The doctor regularly told me to tough out debilitating side effects and when we told her that it was too much to bear, her only solution was to add more medication, which included the SSRI Zoloft. Once adding the SSRI, it was still nowhere near enough to counter the side effects of the antipsychotic, and it further complicated my situation by adding on even more agonizing side effects of its own. Every afternoon my anxiety was so intense that my teeth were constantly chattering and all I could do was sit on the floor and shiver convulsively. The doctor then suggested that I raise the dose of the SSRI even higher, but my parents and I thought this was a terrible idea since I was experiencing excruciating headaches that felt as if my head was going to crack open.

After over a year of living this way, my parents and I decided I should get off all medication. We discussed this with the doctor, and since I was homebound because of the medication and my quality of life was actually worse, she agreed. The only guidance the doctor gave us about the “withdrawal process” was that we needed to “do it slowly,” and that “it might be a little bumpy.”

To be honest, nothing could have prepared my parents and me for the hell we were forced to live in for the next six months. The first month of withdrawal, I was basically in a comatose state. I would sit on the floor in the same position, unresponsive to anything for hours. My mind had become a black void, completely empty of thoughts and I lost my ability to think. It was as if my life had stopped and I was living in a constant “nothingness.” During the times that my thoughts did return, I was suicidally depressed. All I could do was sit on the floor and constantly think about what a worthless person I thought I was. I developed extremely distorted body image issues and self-disgust, where simply looking in the mirror would set off my symptoms.

As time went on and I had less and less drugs in my system, the suicidal ideation increased. I would sit on the floor in agony because I thought I had thousands of bugs crawling all over my body and burrowing into my skin. I would scratch my skin until it was irritated and sometimes bloody in an attempt to stop the sensations. Eventually, I also became homicidal and extremely violent. For our safety, my parents had to remove all sharp objects from our home. I needed to be monitored 24/7.

Because of the lack of resources, my parents were forced to close down their business so they could be with me. I had such severe personality changes I became completely unrecognizable to my parents. At that point, when my mom looked into my eyes she saw a complete stranger. I would suddenly go from total calmness into maniacal rages where I would scream at the top of my lungs for hours. During these rages I would throw things and hurt myself, which included ripping my hair out and forcibly banging my head on walls and windows.

I had become so paranoid, I was afraid to leave the house. I thought that if anyone saw me they would kill me. My parents were constantly on edge because they never knew exactly what would set me off. When my parents reached out to the medical community for help, they were told to put me in a mental hospital, where I would be further medicated. This made absolutely no sense to my parents because I was trying to get off the medication, and it was the very reason why I was this way to begin with. So they decided we would “tough it out” as a family and hoped that it would pass quickly.

Sadly, that wasn’t in our favor as my withdrawal duration lasted almost six months. At the peak of the withdrawals, one of my worst rage episodes took place on Christmas Eve. It lasted for well over 36 hours and I was near death from complete dehydration and exhaustion. My body was in constant motion during this period and I was not able to sleep, eat or even have a sip of water! As my caregivers, my parents were also put into the same dire situation. I was screaming in anguish, despair and hopelessness with an incredibly strong urge to kill myself and others. I was totally overcome with a feeling that words cannot describe. I felt as if I was experiencing torment so wild I didn’t know what to do with myself and that there was nowhere to escape the madness. I was hysterical, paranoid and delusional.

Once my family and I got through the horror of withdrawals, my parents really thought I was through the worst of it all and would start getting better. As time went on, we came to realize the medication had permanent effects. Going into the treatment, the doctor had put us under the impression that there were really no side effects to be concerned about at all. She told us everything we wanted to hear by portraying the drugs as some type of miracle, giving us a false hope that I would get my life back. Since withdrawal, I now live with so many new illnesses I never had before taking medication. Some of these include: breathing problems, akathisia, tardive dyskinesia, OCD, psychosis, sleep and speech disorders and acid reflux. Also, my original Tourette Syndrome has progressed to become so bizarre and complex.

Even after I was off the medication, the doctor assured us that all the side effects would eventually go away after two years. This isn’t what happened.

Whenever we try to seek new help for me, doctors throw their hands up and say there is nothing they can do and they refer me on. I have tried a wide variety of treatments, including alternative and natural medicine. It’s hard to counter the damage. So many doctors will not even take me on as a new patient because they already know from my initial information provided they will be unable to help me. Often when I try to explain my new symptoms to the doctors, I completely lose them in the process.

I had my whole life ahead of me, but now I have become homebound. Because I was in the top 10 percent in the country for my high school standardized testing, I had been awarded a prestigious scholarship to attend a four-year college tuition-free. Due to the medication side effects, I became too disabled to take the classes, so I was forced to take a medical leave of absence and ended up completely losing the scholarship. As it stands now, I live with my parents under their complete care. I may never be able to live on my own, to work or have a career or the chance to have a relationship. It has been four years since I have taken my last pill, and I am still experiencing disabling side effects from the medications.

To tell my story through music, I wrote a cello concerto entitled “The Eternal Sorrow” (embedded below). It is written in honor of all those injured by psychiatry and psychiatric medication — not only those whose lives were lost, but also those who are living and continue to suffer from the harm done. The title of the song refers to the permanent damage that psychiatric medications can cause. Through the song, it is my goal to raise awareness about the serious risks associated with psychiatric medications, and use it as a tool to connect with others in the psychiatric survivor community. In the background of the song, the swelling of the strings in waves are reminiscent of the torment I experience on a daily basis. My symptoms hit me like a ton of bricks and then die down only to give me a false sense of security because they will be coming right back again with a vengeance.

A version of this piece originally appeared on Mad in America.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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My Life With Tourette's Syndrome


Since I was a kid, I knew something was a little different. I made weird noises and nodded my head uncontrollably. It happened everywhere — at school, at home, in public, alone. I wasn’t doing any of this intentionally; I physically had no control over my “habits.” (That’s what my family called them for a while, perhaps to avoid the stigma of the T-word). The more I tried to stop, the worse the movements and noises got. I had no idea why this was happening or how long it would last, and it seemed like no one could help. It was a pretty terrifying experience, especially as a fifth grader.

My parents took me to every doctor and specialist in the area. Finally, when I was 10 years old, a doctor told us I had Tourette’s syndrome. I had no idea what that meant. None of it made any sense to me. Why is this happening? What is wrong with me? Will it go away? Will everyone make fun of me? Will I ever get married? Be able to have kids? All of these thoughts were speeding through my mind, and they still do sometimes.

I am not usually the first one to bring up my Tourette’s, but most people can tell I have it. This really wore on me for a long time. There was a constant flow of worry when I was out in public: Are they going to stare? Are they going to say something? That worrying led to depression and intense anxiety. I usually tried to put up a brave front and act like it didn’t bother me, but it did.

Now, years after my diagnosis, if I told you I went out in public every day and didn’t care if people were staring, I would be lying. I still struggle with anxiety and depression. I do care when people see the movements and hear the noises and wonder what’s wrong with me. I can’t help it. I understand just because people are staring doesn’t mean they’re judging. They may be curious, or confused, or ill informed, or might be staring at my hair or clothes or smile. But no matter their reason for looking, I’ve learned those people’s opinions of me don’t matter. The only people whose opinions I care about are the people who know and care about me. Every time I see a stranger staring, I care less and less.

I would have never accepted and dealt with my Tourette’s if it wasn’t for my family and friends. To me, they are some of the greatest people on this earth. They treat me how everyone wants to be treated — normal. I don’t want special treatment. I don’t want anyone to feel bad for me. I just want to be accepted for who I am — and that’s what the best people in my life have done for me.

A group of 5 people in a photo booth wearing silly hats, over-sized glasses, in a Hawaiian themed background

When I was first diagnosed, I prayed to God every night to take away my Tourette’s. I begged Him to let me be in control of my body again. But once I realized my Tourette’s is not a disease and cannot be cured, my outlook changed. I’ll never get rid of my Tourette’s, but it’s not going to kill me. Each day with Tourette’s is different for me. Some days are fine, and others feel unbearable. It’s just a part of my DNA now. Once I realized that, I learned to accept and even embrace my Tourette’s. It’s as much a part of me as my eye or hair color. It’s also one of the many things that makes me the person I am today.

I try to think of my Tourette’s as God’s gift to me. Some might say it is my cross to bear, and I bear that cross with pride. I am not ashamed to say I have Tourette’s. I hope anyone who reads this who’s struggling with Tourette’s, or something similar, knows they don’t have to be ashamed either. We all probably have things we would never want people to know about us. But once you realize the thing you see as a “flaw” is the thing that makes you special, you might no longer need to hide it. All the parts of us, even the parts we wish we could change, combine to make us the people we are.

I’m not writing this for anyone to feel bad or pity me. I’m writing this to hopefully help someone who may be going through something similar. I felt so alone after I was diagnosed, like I was the only person in the world dealing with this. I want anyone going through something like this to know they are not alone, and it does get better. You may have Tourette’s, but Tourette’s doesn’t have you. It’s played a huge role in making me who I am, but it isn’t the entirety of who I am.

I will end with one of my favorite quotes I read on days when my Tourette’s feels like it’s taken over:

“Once there was a man who was afraid of his shadow
Then he met it
Now he glows in the dark.” – Ben Loory

It reminds me I don’t need to hide from the things about me that worry or scare me, my Tourette’s included. It’s not just good to be different, to me, it’s better to be different.

Ten years after my diagnosis I still don’t know why it happened. But I know nothing is “wrong” with me now. I don’t have to be afraid of my shadow. It’s what allows me to glow in the dark.

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When Kindness Overcame Ignorance About Tourette Syndrome at the Movie Theater


My son Jacob has Tourette syndrome, a neurological disorder that causes him to make involuntary sounds and movements. Fortunately, I don’t believe Jacob has had to deal with many uncomfortable situations as a result of his Tourette’s, but there have been a few.

Once Jacob and I went to see a movie at a local theater. I knew that taking him might be a problem, but I didn’t want anything to prevent him from doing things other kids could do. I was not about to punish Jacob for ticcing, and in my opinion, that’s exactly what it would have been — a punishment.

When we got there, no one was in the theater, and I prayed we would be the only ones. I knew if there were others, the staring could start and hurtful things might be said. Fortunately, with the darkened theater, any stares were unnoticeable, but the remarks were loud and clear.

I am not usually very vocal when people stare because I don’t want to make Jacob uncomfortable. That night was different.

Someone shouted out basically telling us to leave the theater, and I stood up and said a few choice words as I told them Jacob had Tourette’s. Even after that, the comments continued.

My heart raced, and I was ready to pounce in Jacob’s defense once again. Then Jacob reached over to wipe away my tears as he put his arm around me and said, “Don’t cry Mom. It’s OK. You believe that, don’t you?” This kid’s amazing.

As people exited the theater, I noticed some coming our way. I was prepared to be attacked. Instead, a woman along with her husband and son came up to me and hugged me while apologizing for the rudeness of others.

I cried and told them I just wanted people to understand that he had every right to be there, too. Then another infuriated couple expressed their concern that Jacob was subjected to such insensitivity. All the while Jacob stood there with a huge smile on his face, thanking these wonderful strangers who went out of their way to encourage him to be proud of who he is.

These same people followed us to the front and confronted the assistant manager, telling him how rude even his employees were. They were fighting for a complete stranger; they were fighting for my son. The apologetic manager tried to refund our money but I refused, explaining that we only wanted people to understand.

As we turned to leave, another stranger came back inside the theater and walked up to Jacob. She fought back tears as she apologized to Jacob for having been one of the rude people. She said she was ashamed of herself and that she had learned a huge lesson from this experience.

These are the stories you rarely hear, but these are the stories that can change people’s lives. All of those people changed me, and I believe they changed Jacob.

Here’s what I hope for them: I hope that after this experience they went home and shared their story with others, and I hope that knowing Jacob — the kid who thanked them for their kindness, the kid who didn’t get upset, the kid with Tourette’s — changed their lives forever. He sure has changed mine.

A version of this post originally appeared on Savannahnow.com.

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To the Boy Who Made Fun of My Tourette Syndrome


I have Tourette Syndrome. You might not notice it right away when you meet me, but soon enough you’ll notice my eye tics. No, I’m not winking at you. No, I’m not rolling my eyes at you. And no, there is nothing wrong with me. I just have Tourette Syndrome, it’s as simple as that.

Growing up, I was used to kids making fun of me. Calling me “blinky” or “twitchy.” Pointing at me and mimicking what I do. Or someone occasionally asking why was I winking at them. I was used to it and I had gotten to the point where I didn’t let it bother me. I didn’t let any of the ignorant comments like “But if you Have Tourette’s, why aren’t you swearing?” bother me anymore.

It’s OK they didn’t understand swearing is actually one of the rarest forms of Tourette Syndrome. It’s OK they didn’t understand that no, I actually can’t control my tics, even when they tell me I should just stop. And it’s OK those kids growing up made fun of me. You really didn’t hurt me. If anything, you just hurt your own character.

It wasn’t until the summer before my sophomore year of college that someone actually genuinely hurt me — for the first and last time — about my Tourette Syndrome.

It was a hot July night. I was at a friend’s house after being at the beach all day. They decided they wanted to have some people over for a bonfire. I figured why not, even though I was insanely tired and worn out from the long day we had just gotten back from. Now for me, being tired sets my tics into overdrive. My body is exhausted, my nerves are shot and I don’t have the willpower to hold them off. I didn’t think much of it because even though I could feel myself doing my eye tics more often than usual, I had pushed it to the back of mind because I figured no one would say anything.

Well, that’s where I was wrong. Twenty or so minutes later, all of the people had showed up. One boy in particular stood out to me. Three things I could instantly tell about him were that he was arrogant, someone who didn’t have a filter and a not so nice person.

Little did I know, he was going to be the person to bring me to my breaking point. The person to finally bring me down, all because I had Tourette Syndrome. The first person in, I don’t know how many years, to actually get through my barrier and hurt me. All because I was a little different. Although this was about three or four years ago, I still remember it so clearly. We were all sitting outside by the bonfire, it was about 10 p.m. and I was growing more and more tired, which meant my tics were acting up.

I was wearing my oversized sweatshirt that made me feel protected from the world, minding my own business, watching the flames rise up from the bonfire, when I heard it.

“Hey girl over there in the hoodie, what’s wrong with your face?”

In all my years of having Tourette Syndrome since I was 7, never have I once had anyone bluntly say “what is wrong with your face?” I can’t even begin to tell you how much those words stung. I held in the hurt and said nothing, hoping by not meeting his gaze he would just forget about it. But boy, was I wrong.

“Hey I’m talking to you. Seriously, what’s going on with your face?” he said, laughing.

I played it off and said the smoke from the fire was bothering me. He arrogantly fired back, “No, you’re winking at me aren’t you? Awww how sweet, hoodie girl wants a piece of me.”

Everyone laughed. I sat there, feeling a wave of fear overwhelm me. My whole body started to tremble. Tears stung my eyes. And I tried my hardest to hold in my eye tics. But with Tourette Syndrome, you can never completely hold in your tics. The harder you try, the worse the urge gets.

I managed to whisper “I don’t want any part of you. The smoke is just irritating my eyes. Please leave me alone.” I didn’t look up at him once and I forced myself to stare at the fire. To ignore him. But all I could feel was his eyes watching me, waiting for my tic to happen again. As the urge built, I unfortunately couldn’t hold it in any longer. The urge was too much to resist and it happened. And then finally, I was brought to my breaking point.

“There it is! Again! God, would you just admit you want me? It’s clearly obvious with you winking over there at me. You want me so bad.” I didn’t say a thing, I could feel the panic start to set in and I just sat there, my hands going numb, listening to him verbally attack me.

“Well I don’t want a piece of you, not with you twitching all weird like that.”

I quietly said, “Please stop. I don’t want anything to do with you and I’m not winking at you. I have Tourette’s, OK?”

And he fired back, “Tourette’s? Ha! Well good because I knew just by looking at you there was something wrong with you and your face. Honestly, you should see how ridiculous you look.”

And the next thing I knew, I just ran. I don’t know why it hurt so bad, but it did. I got up and ran and tears were falling like crazy and my heart was hurting and I just had to escape. All the while, he yelled after me “Oh look, she’s crying like a little girl.”

And everyone laughed. To this day, that was the worst encounter I’ve ever experienced with someone making fun of me because I have Tourette Syndrome. So, to this boy, whose name I don’t even know: I realize you probably think you got the best of me, that you had the last laugh, and that you think you’re some kind of man because you made a girl cry. But you are no man to me. You are a bully. And I am so much stronger because of you. So I actually want to say thank you.

Thank you for being so cruel to me. Thank you for making me cry. If you hadn’t, I never would have had the eye-opening realization that there isn’t anything wrong with me, there was something wrong with you. I hope you don’t go through life feeling so insecure that you feel the need to bring others down. I hope you are able to understand the differences of others, just like I’m sure you would want others to understand any differences of yours. And I hope when you’re older and hopefully more mature, you think back on that night and remember what you said to me and feel bad.

But I don’t feel bad about it anymore. I’ve let it go. I’ve used that hurt to do something I had always wanted to do, but never felt I could do. I’ve finally accepted I am OK with having Tourette Syndrome and people are going to make fun of me and judge me, all because they don’t bother to understand. But I won’t let it bother me ever again because I realized that night there is nothing wrong with me, there’s only something wrong with society’s stigma of those with Tourette Syndrome.

So to that boy who made fun of my Tourette Syndrome, I really want you to know something. I love who I am, Tourette Syndrome and all.

And I don’t need your approval.

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Thinkstock photo via Ola_Tarakanova.

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It's OK to Ask About My Tourette Syndrome


As a young child, I was constantly told by adults and other children that I was “different.”

Sometimes, when people pointed out my differences, they focused on the good things. More often, they seemed to focus on how I didn’t act like other children. My coordination was poor and I was very bad at sports. I blurted out random nonsense and I often dropped things for no reason at all. Sometimes I’d fall into things or trip over nothing. As I got older, people started to notice my facial tics and how I could never control how often I blinked my eyes. A lot of people assumed I was lying all the time because of my hands touching my face or my inability to make eye contact. 

This followed me to adulthood. I tended to hang around online where my awkwardness wasn’t obvious. I still had trouble making friends and had been through hundreds of awkward job interviews. Even though I wanted to do something about what my body and mind were doing, I wasn’t sure there was a cure, much less a diagnosis. Sometimes, I would be kept up at night simply wondering what was causing my pain. Muscle tics are painful to me, especially in the face and hands. Emotionally, I was constantly hurt that no one would trust me simply because of physical movements that I had absolutely no control over. I felt depressed and suicidal. I felt like I would never have close relationships with “real” people.

Until a doctor casually mentioned that I might have Tourette syndrome (TS), I was lost. I had wrongly assumed my tics were caused by depression and anxiety and that it was all in my head. After researching, I realized it was likely the other way around and that a lot of my anxiety and depression came from my experiences living with TS. At first, it was hard to admit something I had very little control over was affecting my life in such a profound way. Over time, with help, I learned to accept TS for what it is and not to be ashamed by it. 

I still feel awkward most days, but I have learned I am very open to people simply asking me about my tics and random odd noises. I would rather engage in a conversation than be stared at and whispered about. It really is OK to ask! It is therapeutic for me to engage with people and hopefully share some information that they didn’t know. If you have TS, know you are not alone. It is embarrassing at times, but you shouldn’t feel shame over it. I want to engage with you, too. I want to talk with you and share similar experiences and explore different ones. I want you to know about my experiences. It is through shared knowledge that we learn and grow. Maybe you aren’t at the sharing stage yet and that is OK. It took me a very long time to be comfortable in my own skin. TS may be a monster sometimes, but it’s one that can be put in its place.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via guruXOOX

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