trista_s

@trista_s
I am multi challenged and neurodiverse.
Allison Kramer

Sensory Processing Disorder and Hyperacusis

Purple and red were the colors I chose the day the classical music played through an old, slightly warped and scratchy-sounding record player. Peaks and valleys gave way to holes in the paper made by too much pressure from my hands. We 6-year-olds were asked to draw how we “saw” the music. Sight wasn’t the first sense that came to mind. It was my hearing. I used the crayons to illustrate the stabbing pain I felt physically in my ears, leaving me shutting down, hands over my ears, face down on the desk and near tears. I had a kind first grade teacher who had something many other teachers lacked: common sense. She genuinely cared for her students. Noting my condition, she asked to see my paper. “Oh my!” she said upon looking at the paper. She later called my parents, not to complain but to tell them that something was wrong and she was concerned. The matter wasn’t discussed further. I wasn’t blamed or shamed by my teacher or parents. If my classmates noticed me, they never said anything to me about it. Classical music, opera and heavy metal are sensory nightmares for me, even played at a low volume. Classical and Opera are very “uneven” and “pitchy.” There are unexpected peaks and valleys that trigger my Moro (startle) reflex. Rock music doesn’t have that. It is even and level to my ears. Country, R&B and smooth jazz are also tolerable. The only rock band I cannot listen to, due to their choice in sound effects, is Pink Floyd. Classic jazz ala the Miles Davis variety is also excruciating. Peaks and valleys abound. I also hate live albums. All that hand clapping and whistling is torture. There is one exception, and I think it is because it was an outdoor concert: Peter Frampton’s “Frampton Comes Alive.” I don’t own the entire album, but do have “Baby, I Love Your Way” and “Do You Feel Like I Do?” I even like the part where he puts his mouth in the tube. This is in stark contrast to hearing Pink Floyd’s “The Wall,” borrowed from my sister out of curiosity. My hypersensitive hearing worsened when I turned 16. I want anyone associated with neurology to take note. It is interesting that 16 is around the time schizophrenia and bipolar often begin. I wonder if there is a link that comes along with a growing brain and hormones? Intelligence alone does not make an autistic person “high functioning.” It doesn’t mean they struggle less or are less deserving of services. Sensory processing disorder is a very real and life-limiting part of my autism. I choose to say “my autism” because each person will experience their autism differently. My hypersensitive hearing affects my relationships with others, as well as accessing the world. My hypersensitive hearing will affect where I live, when and if I can work, and my ability to communicate and form relationships as well as develop greater autonomy.

Carla Mills

What I Wish Others Understood About My OCD and Compulsive Hoarding

Recently, I was watching one of my favorite shows when I heard something that stuck with me. “Hoarders” is an intervention type show where family and friends typically assist a hoarder with facing his or her problem or illness and clean up their home. A family member assisting in the process mentioned during an interview that he was unable to feel empathy for a person with a problem he didn’t or wouldn’t have himself. In other words, because he didn’t understand his sister’s illness, he couldn’t feel empathy for her. I have never had a number of health conditions, but for me, it’s not difficult to feel empathy for people going through the pain, treatment and emotions of their care. Wow! But I guess the issue is we are talking about a mental illness, so it’s not as easy for people to understand. I find that unfortunate. Hoarding is a facet of obsessive-compulsive disorder (OCD), which is an anxiety -related mental illness. I am a “recovering” hoarder. That’s what I use as an explanation because I have worked hard and have been fairly successful at conquering that predilection. Unfortunately, I have struggled with OCD my entire life. I can look back to when I was very young and remember counting, checking and constantly rearranging in an attempt to find control in a life where a lot was out of control. I never heard the term “OCD” and never knew what I was doing until I was much, much older. I was always painfully neat and required a sensible organization system. When my family went away on vacation, I sorted my change into cups for the arcade, the phone and the snack machines. This character “flaw” was always a source of amusement for those around me. So how did I go from being a “neat freak” to a hoarder? Good question. Really good question. I don’t even recall, except I always seemed to save things. At some point, life must have required too much of my time to allow me to keep control of all the things I saved and started to overwhelm my space. Now I hate to admit it, because truly, lack of coping skills irritates me, but several unfortunate events in my life conspired to leave me a bit lost. Queue the hoarding. Loss of control. Powerless to get it back. Then the king of unfortunate events happened. Our house burned down. Hoarding problem “solved.” We lost everything, including our pets. Painful. Particularly when you basically have no coping skills. But life, my friends, does go on. Recently, my daughter became ill. For me, this completely redefined the concept of painful. It also caused some issues in my family situation and as explanation for my daughter’s difficulties. I was sharply reminded — by family members — that my hoarding was clearly detrimental to her health. Wait, what? What hoarding? Was I still a hoarder? Did I create my daughter’s illness by being a terrible person, a terrible mother? Talk about increasing the pain when I thought there was no way to increase it. I went home. I looked around and I ripped cupboard doors open, looking for offending items. I sorted, I organized, I looked for things to throw out. I scrubbed and sweated and fretted. I stressed and cried and called my sister and yelled into the phone that I was not a terrible person, that I was devoted to being a mother, that I was working so hard to help my daughter get well and to cope. For the first time in my life, I was actively looking for good coping skills. Breathe. Just breathe, I told myself. I was not an active hoarder… I was a recovering hoarder. That word should never have been thrust into my face at a very delicate time — because it has no use and wasn’t relevant in this situation. Look, we all make mistakes, we all deal with life and its unexpected events and many of us go through mental illness. Let’s call it what it is. Mental illness. These are not dirty words, this isn’t a weakness, this isn’t a character flaw. This is an illness. Many of us spend our lifetimes working to find support, treatment and recovery. And many of us face the stigma our whole lives because we have a mental illness. What a shame. Because the last thing a person needs when facing an illness is judgment, shame and accusations. So after all of that, my daughter asked me if I was going to continue to let others define my value as a person. Was I going to let unkind words keep me from my joy? Damn, I thought. She is a smart kid! No, I am not. No, I will not. I am going to continue my recovery process, be the best me I can be and be there for my daughter. I want to help her heal, recover and enjoy her life — without any judgment. We want to hear your story. Become a Mighty contributor here . Thinkstock photo via Pimonova.

27 'Habits' of People Who Live With OCD

While we usually talk about how mental illness affects us in ways other people can’t see, with obsessive-compulsive disorder (OCD), this isn’t always the case. Many (but not all) compulsions manifest outwardly, so whether you get up to see if the oven is on, tap three times to feel “just right” or wash your hands until they bleed, it can be hard to hide these behaviors. So we asked people with OCD in our Mighty community to share with us “habits” they developed because of their OCD. Whether these habits are compulsions themselves, or manifest because of compulsions, they might held you understand what someone with OCD is going through. Here’s what they told us: 1. “Putting my money in denominational order, facing same way in my wallet when receiving change at the store. People behind me huff and puff about it but it will give me anxiety if I do not do it right then and there. My boyfriend now does it too but mostly because he has seen my reaction once when he went to pay for something.” — Ann L. 2. “Closing all the tabs on my phone, clearing all notifications and blacking out the screen. If I leave just one open or my screen on, it will continuously stress me out until I fix it. Seeing other people’s phone with just endless notifications and tabs open gives me so much anxiety, but I try not to look at it because it’s not my phone to fix.” — Sabrae M. 3. “Picking my skin. Dermatillomania. In my worst times I will dig/scratch out my freckles (like tonight). On not so bad days I wash my face and look for zits. It’s a compulsion I can’t really control. Even at work I’ve caught myself scratching, rubbing and casually picking. Especially in an uncomfortable situation.” — Chynna R. 4. “I ask indirect questions to people I know will give me the direct answers I’m seeking as validation to comfort/calm my obsessive thoughts/worries. I don’t ask direct questions because I know that will annoy people, especially if I do it repetitively. But if I ask indirect questions, I get the answers/validation I’m seeking, and it seems to annoy people less.” — Kaylie E. 5. “It’s really weird… but I spell. People have asked me time and time again why my thumbs are twitching and why my lips move after I finish talking, but it’s because I’m physically trying to spell out the words I just spoke. Strange, I know.” — Elisabeth A. 6. “I count every thing! Walking up stairs? Counting. In a room? Counting how many paintings, how many knick-knacks, etc. Eating M&Ms? Separating by color and then counting.” — Laura A. 7. “I buy things in multiples of two. Even if I only need one, I will buy two. It’s also about even numbers. Almost like Monk was in his show. I can truly relate to that show.” — Melody A. 8. “I type out words I hear on TV, radio and conversations on my ‘air keyboard’ with my fingers. I try to do it so low-key that no one sees me though… When I used to play the clarinet in school, when I would listen to the radio, I would ‘finger’ the notes I heard on my ‘air clarinet’… if that makes sense.” — Jessica J. 9. “I’ll pretend I’ve forgotten things so I can go back (repeatedly) to check locks/oven. When I was a kid, I vividly remember refusing to put away the dishes because the intrusive thoughts made me believe I was going to do harm with the knives.” — Jen L. 10. “I constantly check for phone, keys, wallet, etc. in my pockets, to the point that when [someone walks by me] it literally looks like I’m ‘[making] triangles’ with my hands. It’s a bit embarrassing and most the time I don’t realize I’m doing it until someone looks or points it out.” — Charli B. 11. “I feel like I am responsible for everyone I care about’s problems. If I see someone might be upset about something, I try to throw hints about something that will help and they always seem so confused, but I feel like if I can’t make them happy, then it’s all my fault. So I’m constantly feeling guilty if everyone I know isn’t happy.” — Kelly G. 12. “Checking things over and over. Even if you’ve already checked, you have to check again to make sure you were right. Or you have to do things certain ways/in certain patterns because if you don’t, you feel like something bad will happen.” — Erin H. 13. “Saying ‘I’m sorry’ even if I did nothing wrong. Whether it’s saying ‘I’m sorry’ to my family or friends, I often say it more than once and ask, ‘Are you mad at me’ along with it.” — Taylor C. 14. “ I say things, then mouth what I just said. When I get in and out of the car, I have to open and close the door twice. I sometimes wash my hands twice in a row and brush my teeth twice in a row.” — John R. 15. “Rewording the words I see on signs, flyers, billboards, etc. so they are rewritten in my mind without any vowels. I also live in a rural area and have to say, ‘Moo,’ the first time I see a cow in a day. (Doesn’t happen every day.) If I don’t ‘moo,’ something terrible will happen. That’s a real gem to try explaining .” — Jennifer R. 16. “Checking the alarm on my phone. I could have just picked it up and looked at it, but [fewer] than 10 seconds later, I have to check again to make sure I did actually set it.” — Sheryl F. 17. “I rehearse what I’m thinking of saying in my head and rehearse conversations, but sometimes without realizing, I might mutter or mumble under my breath while I’m doing it, making people stop and ask me what I said, or what I’m saying. That then makes me feel really awkward and I never know how to reply.” — Ka C. 18. “For family gatherings where we all pitch in and bring food, I can’t bring just one dish, I bring four or five. I can’t make a normal amount of anything, I have to bring excessive amounts of food because I’m afraid there won’t be enough.” — Debbie S. 19. “When I check out at a grocery store, my items have to be set on the conveyor belt a certain way. My kids have tried to help me unload the cart, and if they don’t do it right I get anxiety. They’ve learned to unload it how I like it. I honestly feel bad about this because they don’t understand what goes on in my mind, and that it’s my OCD and anxiety… I feel like they’re going to hate me when they grow up because of it. Like maybe they’ll feel like nothing they do is ever good enough… and that gives me anxiety… so a lot of times I will just do things myself to avoid me having to correct them and make them feel less than ‘perfect.’ I hate it.” — Jessica J. 20. “Tapping my pencil before every new sentence I write.” — Olivia R. 21. “Asking the same question over and over again. To the same people. Getting the same answer. In case I heard it wrong the first five times.” — Sam F. 22. “Counting change and bills multiple times, super noticeable when I was a cashier. 12345, 12345, 12345…” — Susan S. 23. “Freezing time. Avoiding tasks or just daily life by sitting/laying on the couch or bed. Freezing myself gives me a false sense that bad things won’t happen. You see lazy, I see ‘safe.’ If I don’t move, nothing bad can happen.” — Krissy M. 24. “Letting the majority of my house fall into filth because I’m obsessed with cleaning one room or area repeatedly for weeks until it’s absolutely perfect.” — Tara L. 25. “Wearing the same clothes every day because the previous day you wore them nothing bad happened and you hope that continues. I also tend to eat the same meals daily in hopes that nothing bad will happen.” — Jade M. 26. “If it looks like I’m not paying proper attention, it’s because my eyes are busy rolling around, outlining the pattern of what I am looking at as many times as it takes to feel comfortable! This could be 10 times over until I can find the strength and mind power to stop. Sometimes I have to leave it on an odd feeling because my tic was left incomplete.” — Jade G. 27. “I have lots of noise on. Especially driving. Talk radio, news, anything busy. It drives my husband bonkers, but these keep my intrusive thoughts away. Mine are especially bad when I drive. Some have been so bad I have to pull over, but the noise and distraction of news radio has really made a difference.” — Cassie B. What would you add?

Amy Bell

My OCD Is Not Affected by Germs and Mess

Editor’s note: If you struggle with obsessive-compulsive disorder (OCD), the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741. To find help visit International OCD Foundation’s website . The clock on my television reads 8:49 a.m. I occasionally get up this early when it’s not a work day. Today it is because I am on a mission that would take most people a couple of hours tops. The clock changes to 8:50. That’s a good time. For as a long as I can remember, I have needed to begin tasks, any tasks, on time intervals my obsessive-compulsive disorder (OCD) brain deems “right” or “good.” Oh, it’s 8:51, and the next good time won’t be until nine sharp. And so it begins. I keep my ashtray, cigarettes and eyeglasses in the same area on my coffee table. My bare feet are crossed and my legs are stretched out on the table’s soft surface. Contrary to popular belief, a person who has OCD is capable of not being preoccupied with germs or color-coordinating their dishes. I am a prime example. I have a tidy house; maybe even an organized and clean house to some visitors. But let me tell you, my OCD is not preoccupied with germs or neatness. It thrives on the multitude of other obsessions and compulsions I complete and think about on a minute by minute basis. These range from ordering, to checking, to placing, to repeating, to patterning and sometimes intrusive thoughts. My favorite television show is playing in the background as I type. It soothes me, maintains me and calms me. I have seen every episode over 30 times easily. What can I say? I’ll take predictability anywhere I can get it. It’s light and easy watching, like one of those sound machines that play ocean waves crashing against the shore. My dog snoozes next to me and I check whether her tiny chest is moving up and down. I am scared for her all of the time. I love her more than anything and I care for her very thoughtfully but I am always filled with worry. There is a laundry basket next to my right leg but I will not leave it unattended. Every slit and fold in the hard plastic scream to me that an accident is waiting to happen. I picture her tiny leg getting caught and me not being there to save her. I look at her innocent face and think, I am an awful person because she needs a bath. Despite the truth, I always fear I am a bad mom to my dog. The guilt is palpable. It’s 9:01. I guess getting the laundry from the dryer will have to wait again. This continues for hours and hours in an endless wait for my brain to give me the go-ahead. I am waiting for some miracle to come from the parting clouds and give me a sign I can do the next task without fear. I imagine my OCD saying, “Amy, empty the dryer now! It’s safe! Run! Run!” The process of cleaning my condo began yesterday at 5 p.m. Once a task begins, I cannot disrupt the process. I can’t say how many more hours it will take, but I know that, in order to leave my home, it will all have to be done properly in the eyes of my OCD. My brain has two levels of success — things not done and things done 100 percent. It is never in-between. There is no pause button other than the cigarette breaks I take to daydream, free from my obsessions. I tell myself “This is so ridiculous” as my fingers search for my lighter. I look to my balcony and am sharply reminded of my screen door that broke last night. I picture it blowing off the balcony, over the railing and falling on some poor passerby’s head. How would I live with myself? I attach it enough to ensure it will withstand the strongest of winds. I sit back down. I go to change the volume and feel proud of my decision to fight my compulsion. You see, for over two decades, I could not move down on numbers. If I didn’t strictly move upwards something terrible would happen. For example, if I was on channel 27 and needed to go to channel 26, I would click, click, click. I would go down to 26, then down to 25 and then up to 26. Voila! Welcome to my life. Fortunately, this is one of the few compulsions I have learned to control through cognitive behavioral therapy (CBT). The second is no longer arranging my shampoo bottles around the ledge until it “feels right.” I just wish I could stop setting five alarms every night. I wonder if my psychologist realizes I follow the exact same routine every time I go to an appointment. These are what I refer to as my quirks. In reality, it is my OCD. When I say routine, I mean my route, lane changes, parking spot, cigarette, phone adjustments, wallet, lipstick and check check check. Keys, interior lights off, headlights off, purse, keys, interior one more time and headlights one more time. When I walk away, I look back once more at lights and once more in purse for keys. This is because I never trust myself. Scratch that — I don’t trust what my OCD tells my brain. It tells me I imagined checking and if I don’t check just once more then it will result in catastrophe. Driving is challenging as my irrational fears have complete control over me when I am behind the wheel. I constantly smoke to fuel the effort it takes me to do a mental inventory of every precaution required. Left turns — I could hit a pedestrian in my blind spot by accident. Passing animals that have been hit by traffic — I need to say a mantra or I am an uncaring person. Underground garage — cars, children and pets flying out of nowhere and me hurting them by accident because I’m not driving well enough. Drive thrus — they won’t have what I need or there will be a conflict. Parking — I need to make a mental note of a landmark so I don’t lose my car. Getting from my car to the door is a sprint — something bad happening is always on my heels. Thank the Lord for self-checkouts is all I have to say. As for this moment, I am safe in my home. I am safe physically but I am in a mental fight of a lifetime. OCD is an absolutely exhausting mental illness. I could go on and on about the negative aspects, but at the end of the day, I think what matters the most to me is connecting to someone out there. I never knew what these symptoms were while I was growing up. I had only heard cavalier comments made about an individual being “so OCD” because they were organized or frequently washed their hands. Yes, those can absolutely be symptoms experienced by many, but society should not chalk up such a complicated illness to misconceptions swirling around our society. This minimizes everything that those living with OCD fight through. When I was diagnosed, everything became clear. I hope my story can help in some small way for anyone out there feeling as if they are losing their minds. You’re not, and you’re not alone. I personally find sharing concerns with those I trust, weekly CBT sessions, a medication plan and open communication with my family doctor are some of the healthy ways I have found to cope. I hope those of us struggling can more easily fight the good fight, trusting we are most definitely not alone. We want to hear your story. Become a Mighty contributor here . Thinkstock photo via tommaso79

Kimi Ariel

We Can't Compare OCD and Trichotillomania to See Which One Is 'Worse'

Everybody who knows me well knows I pull my own hair out. It’s no big secret. I’ve had trichotillomania (also known as hair-pulling disorder) since I was 11-years-old. Fussing with my hair or picking at my split ends are things I do mindlessly and they’ve become such familiar behaviors they seem folded into my identity by now. Being transparent about my hair-pulling has always done me more good than harm, as I get to raise awareness about a little-known condition, answer questions, address misconceptions and sometimes hear a little bit about someone else’s struggles in return. I’m probably half bald, but my trichotillomania is something I haven’t felt particularly ashamed of for years. I work part-time in a local coffee shop and because of the combination of the fast pace and the ease I feel around my coworkers and our customers, I seldom pull my hair when I’m at work. However, one particular Sunday morning when we had a line out the door and in scrambling to fulfill a never-ending string of latte orders, I was becoming frantic. My hands seem to detach from my brain at times like this. Pulling works to soothe some of my anxiety in the moment, although as one might imagine, brewing coffee and steaming milk become an awful lot harder with one hand, since the other one is occupied with something entirely out of my control. The drink ticket line never seemed to get any shorter, but I was steadily getting in the zone when I heard a woman’s voice from the other side of the espresso machine say, “Excuse me?” “What’s up?” I replied, not even taking a second to look up for fear of disrupting my rhythm. “I’m really sorry, I asked the girl at the counter to ask you to wash your hands before making my drink but I guess the message didn’t get to you. I have OCD and I noticed you were touching your hair a lot back there, so would you mind remaking my drink but washing your hands first?” I looked down at the ticket and noticed it was a complicated one. Then I looked back up at the group of patrons forming a circular perimeter around the counter, closing in, hankering for their caffeine and sighed. “One moment please,” I said to the woman and went back to the sink to wash my hands, almost theatrically, huffing and puffing the entire time. I pretended my hands were a magnet physically repelled by my head or else they surely would have lurched back to pull in that moment. I honestly didn’t quite know how to feel about the incident. So while I tried to make sense of it all, I remade the drink at half speed, making absolutely sure I was doing everything the proper way because I could sense the woman watching me. She seemed appreciative when she got her drink, but left without saying anything besides “thank you” and soon I forgot all about it on account of the lunch rush swallowing me up again. After our line subsided, I remembered the incident and decided I was livid about it. How can you walk into a café during their busiest hours and expect someone to drop everything for you like that? I should’ve just told her nothing bad would happen to her if she drank the coffee so I just can’t remake it. What if I played my trich card? Then it would be battle of the compulsive behaviors. I couldn’t stop thinking about the incident, even after my shift ended. But the more I thought about it, the more I began to see how much that woman and I had in common. All she’d done was ask for an accommodation, the way someone with a physical disability would. It was no Herculean task and she’d asked with the utmost politeness. I was ashamed of myself for having been angry, because as someone who lives with a very public and observable mental illness and even as someone who knows anything about mental illness in general, I should have been eager to support her, in the hopes people with mental illnesses won’t have to stand in the shadows all the time. I realized very early on that being honest about my trichotillomania took the burden of hiding off of me and vastly improved my quality of life. For me, it was an easy choice. But for other people, it may not be. That woman was able to enjoy a cup of coffee without sensations of fear or dread and that’s important, whether it was her first time coming clean to a perfect stranger or her thousandth. I suppose I was just offended that for a moment, I became ashamed of my trich again. I do wish I could have told her about it though, even briefly, so she could understand the motive behind my behaviors as well. It seems to me this world runs on compulsions and there might be a battle of compulsive behaviors playing out at this very moment. They range from mild annoyances to pervasive obstacles that make daily life impossible. In the trichotillomania community, there is a longstanding debate on whether one should strive to be cured of the disorder or simply accept oneself, disorder and all. I think recovery is a wonderful and not an impossible thing (in writing this, I’ve just had my first pull-free day of the new year). But in the meantime, being accommodating and accepting of one’s own compulsions is important and may even make recovery a bit easier. I found I was removing a large quantity of worry from my day-to-day life when I stopped fixating over stopping myself from pulling or making sure no one could see the damage. And if I wasn’t as comfortable as I am with my trich, I might even have snapped at that woman and the incident would have ended with us both feeling terribly about ourselves. It seems small and insignificant, but these interactions are reflective of the world we live in and I certainly want to live in a world where you can ask for someone’s help without reservation and they’ll be supportive. I want to live in a world where no matter what you’re struggling with, you can walk away with a great cup of coffee. We want to hear your story. Become a Mighty contributor here . Thinkstock photo via photofriday.

Gessie Perez

The Unexpected Lesson I Learned From Kids About Trichotillomania

Editor’s note: If you struggle with a body-focused repetitive behavior, the following post could be potentially triggering. You can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors . I volunteer once a week teaching religious education class to children at my church. I absolutely love it; it gives me great joy and I feel like I’m doing something worthwhile by giving back to my community. Now normally we follow a workbook, so not much planning has to go into my lessons. But today we did something a little different. My hair has not been this bad in two years. And it’s only gotten like this in less than a month. Kids tend to have no filter, and will just say whatever is on their mind, without really thinking first. I’d like to note here that I teach first graders. I didn’t want one of them to possibly notice my lack of hair and then for me to be put on the spot. So I decided to make a whole lesson out of it. About accepting each other’s differences, how we should love one another, the meaning of empathy and compassion and how they relate to our faith. I started out by asking if anyone would like to share something about themselves that makes them “different.” Quite a few of them actually came forward, and I was surprised at how deep and personal some of them got. I really felt for them and was in awe of their openness and articulation, especially at their age. I thanked them for sharing and told them how brave it was of them. I said, “Sometimes we may feel weird or embarrassed for our differences, but there’s no reason to, because being different isn’t necessarily a bad thing. God created each of us in His likeness.” Isaiah 64:8 — “But now, O Lord, You are our father; we are the clay, You the potter; and we are all the work of Your hand.” One girl said, “Yeah, I really didn’t want to share that and was embarrassed but I stood up for myself and did it anyway.” I told her I’m really happy that she did. Then I shared with them I have something that makes me “different,” too. Of course though I wasn’t going to tell six and seven year olds that I pull my hair out. I have no problem now telling people I have trichotillomania, but I didn’t think my children would grasp it, with them being so young. So I had to put it in terms they would understand, and basically gave them the condensed version. I said that I have a hair loss condition (which isn’t exactly a lie). They asked, “Is that why your hair is short?” I said yes and that I also have a bald spot, then I unclipped it. They all came up and wanted to see it. They asked many questions, though not out of cruelty but just pure curiosity. I answered in a way they would comprehend, without going into too much detail. I said that I am perfectly healthy and not sick or anything, I just lose my hair. That answer seemed to suffice for their inquisitiveness. We discussed the meaning of empathy and compassion; how it’s when we try to understand what other people are going through, and to reflect on how we would feel if we were in their situation. I was very pleased that they grasped the concept well, and they even gave some examples of instances of when they’ve acted compassionate and empathetic. I am humbled knowing that my kids learned and got something out of this lesson today… But I also learned an important lesson from them. It occurred to me afterwards how not one of them pointed out my bald spot or seemed to notice it until I said something. And I doubt they would have even noticed it had I not said something. I’m glad I did show them though, as I think it really drove the message home. I’ve come a long way in terms of accepting myself, especially in comparison to where I was in the very beginning of this whirlwind of a journey. That said, I’ve been having a particularly harder time lately with that; it’s been two years since I’ve had a bald spot. The fact that I was very self-conscious of my hair, while they in fact were completely unfazed by it, made me realize I need to show some more compassion to myself. I’ve heard it described before as, “Treat yourself with the same kindness you would give a friend.” We are often our own worst critics, but what if we started treating ourselves as tenderly as we would a friend? I try my darnedest to love myself unconditionally, though sometimes I just need the extra boost and reminder, and to put things in check. Well, my kids today did just that. Oh, and one last thing! It also occurred to me that today was the first time I’ve gone out in public with a bald spot showing. That is huge. Well, OK, there was one other time; two years ago at my first TLC BFRB conference, but I was amongst fellow trichsters, and I was in another state. Therefore, this was really the first time I’ve ever done it in my hometown, around people in my own community. I didn’t even realize until after the fact how large of a milestone this is for me… Just a few years ago, I wouldn’t even go “uncovered” in my own home around my family. We deserve to give ourselves some credit for our victories, big and small. Despite me still having a somewhat hard time with feeling comfortable with myself, this victory just gave me a really big reason now to celebrate who I am. If you or a loved one is affected by body-focused repetitive behaviors, you can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors . We want to hear your story. Become a Mighty contributor here . 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Sarah Smith

Trichotillomania: Why You Should Stop Saying 'Pull My Hair Out'

Stress. We all experience it at some point. The biting, nagging, foreboding feeling that puts us on high alert. The associated exhaustion, guilt and suffering. Stress can make us want to do things we wouldn’t normally do like eat junk food, punch things, cry or scream. You may have heard some people say the phrase, “It just makes me want to pull my hair out!” in order to convey the severity of their stress. I know I used to say it a lot when I was younger. Little did I know the connotations of that phrase and that it would actually come to haunt me in my early 20s. I have trichotillomania, and it literally makes me pull my hair out. It is a torturous impulse control disorder, in which I actually lose control of my actions and pull hair from my eyebrow, eyelashes and scalp. The pulling sensation is preceded by extreme, unbearable tension; the pulling causes a release. I am very open about my diagnosis in my daily life but that does not mean I am at peace with it. As hard as I try, the seemingly harmless actions and words of others can actually be hurtful, especially when someone tells me they could “just pull my hair out!” The phrase likely originates from people who observed those with trichotillomania or compulsive hair pulling, which has been reported as far back as ancient Greece. Repetitive use of a phrase within a society causes the phrases to be colloquially entrenched in culture. A phrase often becomes automatic or subconsciously related to expressing a certain emotion. Therefore, the problem isn’t that the phrase “pull my hair out” is common. The problem is it is most often used by people who will actually never experience the traumatizing compulsive disorder that is trichotillomania. So please, the next time you hear yourself or anyone say it, remember how those words could affect someone around you. Trichotillomania isn’t always a visible illness, but it still hurts. Help eliminate the culture of stigma and appropriation by thinking before you speak and teaching others to do the same. On behalf of the entire trichotillomania community, I thank you. If you truly do mean what you say and actually pull your hair out when faced with a stressful situation, please seek the help of a medical professional. No one should have to suffer in silence.

Maddie Lapp

Learning to Accept My Trichotillomania on Rosh Hashanah

Hello! My name is Maddie, I am 18 years old and “I don’t play by the rules of the game.” Trichotillomania, or trich, is the compulsion to pull out one’s hair, without the intent of self-harm. Before I was clinically diagnosed, I did everything in my power to hide the damage. About three years ago, I slowly started to open up about my journey in hopes that it could help someone else. I went to my first TLC Body-Focused Repetitive Behaviors (BFRB) conference four years ago in Los Angeles, and have been hooked ever since. After that conference I joined The TLC Foundation for BFRBs’ Millennial Task Force and am now their intern. But something never clicked. I still felt so much shame in opening up when others around me seemed to do it with ease. Seven years of pulling and three conferences later, I am now opening up about my disorder. I have done things over the years such as updating my Facebook cover photo to a BFRB Awareness Week one, and I wrote my college essay on trich, but never anything like this. I believe that over the years, I have mastered the art of hiding. One would think since I’m so involved with the foundation, “coming out” would come easily, and should have happened a long time ago. Well, no. It did not. It is a new Jewish calendar year, and I have a resolution: I am going to accept to the best of my ability. That means I’m going to love and accept myself as well. So here I am, during BFRB Awareness Week and the week of Rosh Hashanah: I have trichotillomania. For those of you still in the BFRB “closet,” just go for it! It is never too late to be make a change, help someone and end stigma! Before, I did not know my name and I did not play by the rules of the game. I am now proud to say, “I now know my name… (and) I’m trying to find my way.”

Community Voices
Community Voices

Trauma healing advice

Hi everyone,
I was wondering if I might be able to ask for some advice and prayer. From a Christian perspective, what’s the best way to find healing from trauma other than counselling? I have trauma from different life events but one of the main traumas which caused me to have ptsd symptoms has come from church and leaders within the church. So, it’s very hard for me to trust. I guess I needs some prayer ministry but I’ve no idea where to go or who to ask… I’ve had some prayer about if but I don’t feel it’s really brought breakthrough.
What has been the most helpful in terms of healing and loving on with your life, for those of you who have experienced trauma? I am really wanting deep long term healing and im asking god to help me as I feel it’s been getting worse recently and I’m not managing very well at all 😔
I try to meditate on scripture, pray etc. Thank you for reading 💗🙏🏻💗

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