Rebecca Martens

@donasabina | contributor
I have Complex Regional Pain Syndrome and Fibromyalgia. I am unable to work due to the effects of both conditions. My spouse has Secondary Progressive Multiple Sclerosis and is unable to move his body from the neck down. He is bed bound, tube fed, and has difficulty speaking, but still at home! We have two children, both on the spectrum, with anxiety issues, and behavioral issues. My plate is full!

The Challenge of Describing What Chronic Pain Feels Like

I don’t have a body. I have an amorphous blob of pain floating somewhere beneath my head. It hurts so loud that my ears are ringing. An orchestra of nerve endings vibrating in excruciating symphony. Its barbed roots run deep, permeating skin, muscle and bone: plunging into the depths of sanity and imprinting onto the soul. Describing chronic pain is not as easy as saying “muscle, joint, nerve” or “stabbing, aching, cramping.” Those words make pain sound so simple and clean, as if it fits perfectly into a box in which it is easily contained. But chronic pain is messy. It blends and blurs. It is volatile and shapeless. Chronic pain does not color neatly inside the lines of language. The colors bleed together. The larger picture is a hazy distortion; indescribable as a whole yet if you look closely, the details of each brush stroke stand out in terrifying clarity. Sometimes I imagine this is what it feels like to put your legs through a woodchipper. Other times, it specifically feels like sharp claws on raw, peeled flesh. Sometimes, it feels like I’ve first rolled around in broken glass, then set myself on fire. Or, have you ever stood under power lines and heard the buzz of the electricity? I imagine my nerves are trying to imitate that. My muscles and tendons are as tight and taut as a steel cage prison. My shins have been scooped out and replaced with pulsating, swollen firecrackers. My ribs are permanently suffocated by rubber bands and boa constrictors. My pelvic girdle is being pried apart as if it’s violently preparing for childbirth. Or perhaps its more akin to falling 10 stories and shattering all 206 bones, the shards then slicing through organs and tissues. It’s the type of pain that should kill you. “Tearing, burning, shredding,” yes, but also urgent, horrifying, desperate pain. Chronic pain takes on many forms. It shifts. At times, unbearably monotonous— loyal and firm in the quality of its presence, and other times the abrasive, erratic ebbs and flows threaten to drown its victim in confusion. Chronic pain does not rest gently in one level, in one place, or on any scale from one to 10. The moment you think you understand it is the moment it will change its appearance. It doesn’t sit still long enough to be tangible, recognizable, predictable. Chronic pain is not a song repeating its familiar chorus, playing within the bounds of harmony or tempo. Chronic pain is a cacophony of blaring, out of tune instruments; the sounds of individual strings and horns as indistinguishable as any chords, rhythm or key. There is no cadence to the chaos of chronic pain. There is no respite, not even in sleep. Chronic pain will stalk you into your dreams like a hungry predator. But it won’t just hide in the shadows and corners — no, it’s a bold, apex hunter. It will run you ragged chasing you through sleep all night, and it will follow your exasperated steps straight into morning; aggressively pulling you back into consciousness with the sound of an inhuman, guttural moan coming from your own throat. Welcome to your new alarm clock. Chronic pain is an exit-less maze, an express train on a looped track. There is no escape, there are no breaks, there are no holidays. The pain medication you are shamed for taking may prevent you from crying hysterically 24/7, but that’s the extent of its relief. Yoga is a wonderful tool but it’s not a cure. Diet is crucial, but it’s not everything. Cannabis helps some folks, but is useless for others. Baths, massage, physical therapy, psychological therapy, we will do anything to ease those edges, but the pain still remains. And for the record, “positive thinking” is not a viable treatment plan, but thank you for the suggestion. My doctor tells me that I’m creative with my descriptions of pain, but honestly it doesn’t feel like much of a choice. The checklist of words they give us aren’t enough to accurately convey the actual lived experience. “Chronic pain” makes it sound like persistent but manageable minor aches and pains, and I would give my right leg to make that true (literally, this leg is super messed up anyway). In reality, chronic pain is intense, overwhelming, torturous, visceral, soul-sucking, dream-crushing, life-stealing, all-consuming, petulant, raging, intolerable, inescapable agony. If I limit myself to saying “muscle pain,” you will miss the glint of the blades tearing into my body. If I simply say it’s “burning, you won’t catch a flash of the flames consuming me. And if I say it’s a nine on your scale of one to 10, all-day-every-day-yes-even-when-I’m-smiling-pain, would you even believe me? But if I describe to you the intimate details of the woodchipper shredding my legs, the sound of the electric vibrations of my powerline nerves, or the nuances of the predator’s claws scraping at my raw, exposed flesh, as well as the specific sensations of my rubber-band-ribs, pried-apart-pelvis, or sliced-from-the-inside-out stomach, maybe then you can catch a momentary glimpse into what it’s like to live inside of this body. So, my fellow pain-filled friends, what words do you use to describe your pain?

Amanda Newell

I Took a Shower This Morning and Now I Need a Nap

I took a shower this morning. Now, for most people this is not cause for an announcement, sticker or Facebook status, but for me, this morning, it was like climbing Mt. Rushmore. In shorts and flip flops. Carrying a bolder. And I’m really freaking tired and want my gold star. Actually, I want a nap. It had been a week since my last shower. OK, go ahead and judge me. I must be a “dirty person.” I must be “lazy, gross, disgusting, a pig.” Actually, if you saw me, you’d be shocked to know I could go a week without a shower. When I’m seen in public I may not be the picture of “put together perfection” but I am capable of creating a fashionable outfit that matches, accessorize, do my hair and makeup and create and look that that resembles a mature, middle aged, suburban mom. Here’s what you don’t see behind “the look.” Those fashionable LuLaRoe outfits I wear every day to work? That’s about all I can wear right now. The super soft cotton is soothing to my skin that is constantly overreacting to unknown signals from the Fibromyalgia. Any other fabric and my super sensitive skin can’t take it — setting off a painful set of itching, sharp zaps of pain and more. So I stick to super soft cotton. If it’s not super soft, I just can’t wear it. Leggings are a must. Not because I’m lazy or can’t be bothered to put on pants. Finding pants that fit my “Body by Prednisone” makeover has been an impossibility. You see, prednisone, or “The Devil’s Tic Tacs” as we in the lupus community have dubbed them, are a fabulous “wonder drug.” It can take care of everything from poison ivy, to asthma to hives to the inflammation from autoimmune diseases like multiple sclerosis, rheumatoid arthritis, lupus, ulcerative colitis and more. However, like all deals with the Devil, it can come with a price. In the case of long term steroid use, this can include an increase in blood sugar (thanks for the diabetes!) leaching of calcium from bones (osteopenia, woo hoo!), increased pressure in the eyes (constant checks for glaucoma), and a particularly lovely condition called Cushing syndrome. Moon face, water buffalo hump, excess weight gain in the stomach (no, I’m not pregnant, sigh) — it’s a fabulous look. Then combine with the fact that steroids also can decrease thigh muscle fibers and you can end up looking like a grape with toothpicks!  Now try finding pants to cover a swollen belly and skinny legs. I’ve tried every store from regular to plus for ones that work (unless I go to maternity and that will be a bit depressing since my “baby” is 11!) And… we’re back to super soft leggings since I can’t tolerate anything other than, you guessed it, super soft cotton. Layers are a must. Because of a defect in my ability to regulate my body temperature (thanks fibromyalgia plus steroids!), I can be freezing one moment and sweating profusely another. The ambient temp matters not. Plus, layers are key if I need to cover bruises from blood work or an inadvertent bump into a wall. Or just random ones that occur for no reason other than the fact that I’m on blood thinners for anticardiolipin syndrome. Yeah, another party favor from lupus. Just something else to think of. Makeup and hair are a whole other issue. And don’t get me started on shoes. The point is that I take pride in my appearance. I have a whole fun collection of jewelry I’ve made as occupational therapy to help my fine motor skills. I love bright colors. My husband can usually tell how awful I feel by how nicely I’ve put myself together that day. The more care I’ve put into my appearance (on a day I’ve gone out) he knows that it’s a gauge for how rotten I feel. It’s a coping mechanism. That brings me to today’s celebratory shower. So why did it take me a week to get into the shower? Why would someone who takes pride in her appearance “let herself go” so long? I guess that’s why I’m writing this. You see, when you have chronic illnesses, you can get knocked down to the point where a shower is actually dangerous. Yes, a simple thing that the majority of you, dear readers, did this morning, was actually truly dangerous for me without supervision and help. After four days in the hospital for a lupus flare with bronchitis kicker, I’m so weak that I can barely get off the couch. Walking from the living room to the kitchen to replenish my water supply (which is crucial) leaves me winded. Walking up the stairs, I need to stop several times and catch my breath and hold the railings. I tried to get into the shower yesterday only to get dizzy and almost pass out. As someone on blood thinners (remember that pesky anticardiolipin syndrome) and I’ve already had a pulmonary embolism, passing out is really bad (they frown on brain bleeds) I have to be super careful. The actual shower itself usually feels soothing for most people. I used to love a nice, long hot shower. When I’m in a flare, a hot shower is torture. Just the feeling of the water droplets hitting my sensitive skin can feel like knives. The temperature fluctuations wreak havoc on my balance. My husband has to hold me up and wash me like an infant as I struggle to keep myself upright. It’s a special kind of trust. It’s an intimacy that is borne of years of living with chronic illness as another member of the family. It’s a last resort when I’m just too weak to care for myself. So today I took a shower. And now I need a major nap. But I’ll take that gold star first, please.

Rachel Calhoun

The Problem With the Standard Pain Scale for Chronic Pain

“Rate your pain.” Such a simple request, isn’t it? I never quite know how to answer it, though. I work in healthcare so I am very familiar with the pain scale, the numbers, the faces, but until I became a patient with chronic pain I never understood how complicated that scale actually is. Pain is such an individual experience. It’s very hard to communicate this experience to other people. For example, you can take two people coming into the emergency room with the exact same injury: a broken arm. These two people will give you a very different description and rating of their pain, even though they have the exact same fracture in the exact same bone. It’s all about how your brain perceives your pain and also your past history and exposure to pain. Those of us with chronic pain wake up every day with some type of pain. This automatically causes a problem with the standard pain scale that starts at zero. Some of us never have a zero. Most of us live our daily lives at the standard pain scale level of 2 or 3, and sometimes at 4 or 5. People who don’t have chronic pain often have a hard time understanding that. We are able to function at these pain levels because we don’t have a choice. So, if I go into the emergency room with pain and they ask me to rate my pain with the standard 0-10 scale, I’m likely going to rate it an 8 or 9 because I only go to the ER when I absolutely cannot get any relief with anything else i have tried. However, this makes the hospital staff question if I am telling the truth. What they have been taught and shown is that a patient at an 8 or 9 is going to be inconsolable, writhing in the bed, screaming out in pain. They look at me and see me lying in the bed with few tears. I may even be on my phone looking at Facebook or Pinterest. I will be changing position in the bed frequently, trying to get comfortable, but I will be quiet and probably appear a little withdrawn. This goes against everything they have learned in their training and years of experience. In their eyes, my pain can’t be a 9; I look like I’m fine, maybe a little uncomfortable. This is where the communication problem arises. A chronic pain patient’s pain scale is very different from the standardized pain scale. If you want me to rate pain on a scale of 0-10, you have to realize my chronic pain scale 0 is the standardized scale’s 2. On the chronic pain scale, I’m usually at a 6 or 7 when I decide I have to go to ER, which converts to the standard scale’s 8 or 9. You also have to realize I have become very good at hiding signs of pain. I try not to talk about it because I know my friends and family get tired of hearing it. I try not to grimace when the pain hits me because I don’t want to answer questions and discuss my newest pain. I use distraction a lot to help me get through the harder times. I don’t like to draw attention to myself; I don’t want people to feel sorry for me or treat me differently because of my illness. I just want to be seen as “normal,” even though I feel anything but normal. So, you can’t assume I am not in pain by judging me on how much pain I appear to be in. We become masters of appearing normal, of faking being well, so when I reach out for help and admit I’m in pain, please realize this simple act says more than any number on a scale could ever say.

24 Fashionable Canes

Mobility aids can offer crucial assistance to people with disabilities, those with chronic illness, and people who are recovering from injuries. While they are extremely helpful, an unfortunate thing is that many look somewhat dull. This list of fashionable canes is hopefully here to change that. There’s not one type of person who uses a cane, so why should cane options be limited in their appearance? A 25-year-old who uses a cane occasionally when she has fibromyalgia flares may not find the same cane intriguing as a 70-year-old who requires a mobility aid full-time due to osteoporosis. I remember when I was looking for a stylish cane at a local pharmacy after flares from my vasculitis impeded my mobility from time to time. I was frustrated, as the only ones that I could find were extremely simple and did not live up to my tastes. Fortunately, there are several websites that offer a variety of aesthetic and fun cane options. (You can also decorate your cane if you already have one you like — see ideas from our community here!) Below, we put together a list of 24 fashionable canes. Let us know if you would buy any of these or if you have one of them in the comments. 1. Buy the cane featured above for $33.50 from Amazon. 2. Buy the cane featured above for $52.95 from Amazon. 3. Buy the cane featured above for $59.87 from Amazon. 4. Buy the cane featured above for $52.98 from Amazon. 5. Buy the cane featured above for $40.99 from Amazon. 6. Buy the cane featured above for $49.95 from Amazon. 7. Buy the cane featured above for $69.99 from Amazon. 8. Buy the cane featured above for $56.99 from Amazon. 9. Buy the cane featured above for $36.92 from Amazon. 10. Buy the cane featured above for $27.52 from Amazon. 11. Buy the cane featured above for $46.95 from Fashionable Canes. 12. Buy the cane featured above for $57.49 from Amazon. 13. Buy the cane featured above for $48 from Amazon. 14. Buy the cane featured above for $34.50 from Fashionable Canes. 15. Buy the cane featured above for $40.95 from Amazon. 16. Buy the cane featured above for $54.95 from Amazon, 17. Buy the cane featured above for $49.96 from Amazon. 18. Buy the cane featured above for $38.70 from Amazon. 19. Buy the cane featured above for $34.95 from Amazon. 20. Buy the cane featured above for $47.00 from Amazon. 21. But the cane featured above for $19.99 from Amazon. 22. Buy the cane featured above for $52.95 from Fashionable Canes. 23. Buy the cane featured above for $34.99 from Amazon. 24. Buy the cane featured above for $48.44 from Amazon.

Ayan Mukherjee

Therapy Illustrated Graphic Shows How EMDR Therapy Can Help Trauma

How can EMDR therapy Help You? If you have experienced trauma(s) then you may have been told that you should check out EMDR therapy. EMDR stands for eye movement desensitization and reprocessing. So how can it help you? When trauma happens, our brain’s information processing system can get stuck and the trauma memory can remain undigested and unprocessed in our memory network. Later when you are triggered, you may get pulled back to this unprocessed memory, bringing back all the emotional charge associated with that memory and subconsciously it may feel like the trauma is happening NOW. In simplified terms, EMDR is a process that helps to kickstart the brain’s information processing system, especially for trauma memories. These memories can then get digested and processed by the brain. Once processed, these memories lose their emotional charge. We then know within our gut, that this is just a memory from the past and that it is not happening now. [Image description: Headline “before EMDR therapy” is followed by an illustration of an older man getting angry and pointing at a young child who is crying, labeled “trauma memory.” To the right, a “present day emotional charge” gauge from 0-10/green to red shows an arrow pointing to an intensity 8 in the red. The trauma is happening now. Below is a second headline, “after EMDR therapy.” A man remembers a gray version of the man yelling at a child, which is labeled “just a memory.” On the present day emotional charge scale, the memory now registers as a 0, while the trauma happened in the past. Image credit: Ayan Mukherjee] EMDR therapy can also be used to alleviate symptoms related to anxiety, low self-esteem, traumatic grief and panic attacks, apart from its traditional role in healing post-traumatic stress disorder (PTSD). Learn more about EMDR, trauma and trauma therapy through Ayan Mukherjee’s graphics on Instagram or Therapy Illustrated. Read about other Mighty contributors’ experience with EMDR in these stories : What I Want You to Know Before You Start EMDR The Surprising Ways EMDR Therapy Affected Me How Therapy Helps Me Find the ‘Hidden Gems’ in My Trauma Memories

Why Did Lea and Shaun Break Up on 'The Good Doctor'?

Oh, love. It comes and it goes for so many. And with that, I wanted to talk for a minute today about what happened during season three, episode 17 of ABC’s hit show, “The Good Doctor,” which follows the life of autistic surgeon Shaun (Freddie Highmore). For those who haven’t seen the episode, please be warned there are spoilers below. For context, in last week’s episode (season three, episode 16), Shaun tells Lea (Paige Spara) he loves her. She replies that she loves him too, but they wouldn’t work well together because she is “a total mess” and he needs “things a certain way.” Shaun responds to her answer by asking a heartbreaking question: “You don’t want to be my girlfriend because I have autism?” She can’t bring herself to respond. In this week’s episode, Shaun tries to prove to Lea they can be good together as boyfriend and girlfriend. Unfortunately, this does not work out as Shaun hopes. Shaun begins by un-alphabetizing items in his house and putting on the toilet paper roll “incorrectly” because Lea likes it that way. During the workday, he convinces Lea to come over to show her he can be less organized. Lea becomes irritated with Shaun for calling her out of work instead of waiting to show her that night. She takes his actions as a confirmation that Shaun won’t ever change and they shouldn’t be together. His actions lead to a final emotional scene where Shaun, who is still trying to “prove” to Lea that he can be the type of person she can date, gets rejected by the woman he loves. Lea, clearly frustrated by Shaun for not listening to her says, “Shaun, you are autistic. You can’t fix that… You are who you are, and I am who I am, and the two of us will never work.” You can see the heartbreaking moment below. In this moment, I just wanted to give Shaun a hug. As a person on the autism spectrum, I feel for Shaun completely because I was in this same exact situation in the past. I pushed her without giving her space and it backfired to her never wanting to speak with me again. Like Shaun, I asked myself, “Why give up when you are already heartbroken?” I learned through that process the importance of understanding that rejection happens to everyone and to not let it define your life. Even though Lea is entitled to her reaction if she felt she was being pushed by Shaun, to me, her explanation — “You are autistic. You can’t fix that” — came off harshly. There are people in the world, like myself, who are on the autism spectrum and are not organized like Shaun is. If you’ve met one person with autism, you’ve met one person with autism. A diagnosis should not be the reason someone says no to a person for a date. There should be specific reasons why someone says no whether it be organization, no spark, etc. I am worried that some of the people I mentor will believe they’ll have fewer dating opportunities because of this scene. I worry they’ll believe any potential partner might steer away from them because they are on the spectrum. As a community, let’s advocate for finding the right person when it comes to dating. It’s possible to find someone who accepts you just as you are. I have been lucky to have several girlfriends today and hope to start a family one day. I hope that’s something I can help my mentees find one day.

The Difference in Being Tired When You're Healthy vs. When You're Sick

When being “tired” is more than just feeling tired… Don’t you just hate it when people try to get one up on you, by always striving to be worse off than yourself? Don’t you just hate it when people assume that tiredness is the same for every single person on this planet? Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?” Me too, and I’ll explain why: I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how tiredness affects our minds and bodies, that’s when, personally, it makes my feelings seem less worthy. So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds different to tiredness in general, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, with tears streaming down my face and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because tiredness has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired. Getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem. Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!). Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands. It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.). So the next time you’re sitting on the sofa binge-watching 90s shows on Netflix, or re-watching every single episode of “Grey’s Anatomy” and staying up until lunch time the following day – please don’t then tell a chronically ill person that you feel tired too. People like us would love to be able to binge-watch our favorite programs, but seeing as doing that would take up vital amounts of energy we just cannot spare, we have to choose activities which will keep us alive – like eating. Remind me again: Are you tired, too? Because I am exhausted. We want to hear your story. Become a Mighty contributor here. Getty Image by Juliia Tochilina

Community Voices

You don’t need to ___________ to have value.

<p>You don’t need to ___________ to have value.</p>
408 people are talking about this
Community Voices

What do you wish someone had told you when you were diagnosed?

<p>What do you wish someone had told you when you were diagnosed?</p>
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Juliette V.

Things That Happen When You Forget Your Antidepressants

Editor’s note: This piece is based on the experience of individuals. Please see a doctor before starting or stopping a medication. When you take a prescribed antidepressant to manage depression symptoms, forgetting to take your medication can happen. Sometimes, forgetting to take your medication happens on one of “those days.” You know, the days when you are late for work, spill coffee on yourself and realize you also forgot your lunch at home? Or maybe instead you went away for the weekend and accidentally left your prescription at home. Whatever the situation may be, life happens. While you should definitely not beat yourself up for missing a dose, it’s important to take your medication schedule seriously and know what the effects could be when this happens. Forgetting to take a dose of a prescribed antidepressant can have a variety of effects, and it’s helpful to remember each person reacts differently. In order to learn what some of the effects are of forgetting to take a prescribed antidepressant, we asked our mental health community to share what happens to them when this happens.   1. “I [get] severely dizzy, get brain zaps, feel really nauseous — just so sick. It’s a nightmare. I have to take it exactly the scheduled time every day.” — Lisa B. 2. “It feels as if I have a fuzzy television screen running through my blood and my touch, smell and sight are so sensitive that even the wind makes me feel like it’s running through my body. It’s not just fuzzy head, it’s fuzzy body, heightened sensitivity and [being] more anxious than I normally am.” — Lindsey A. 3. “Mine aren’t quite as drastic. If I miss it for a day or two, I become more irritable and annoyed, but that’s it.” — Conor L. 4. “It’s like the beginning of a migraine, I’m absolutely exhausted, wobbly and constantly on the verge of tears.” —Hannah C. 5. “I disassociate. I start to feel like I’m watching someone else do the things I’m doing, and I switch into autopilot to get through the day. My head will feel like it’s been stuffed with cotton, it’ll feel heavy and cloudy and it’s hard to think straight or even to hold it upright.” — Erika K. 6. “Sometimes I don’t remember [to take my medication] but then all of a sudden, something simple will make me cry uncontrollably and I can’t stop. Reigning in my emotions becomes an almost impossible task.” — Dani P. 7. “I feel OK for a day. A bit worse for wear by day two. By day three, I’m irritable and nauseous, I have a headache that won’t budge, I lose motivation and energy. Everything becomes harder — like running in water. Then I can’t get out of bed. I sleep and sleep and keep sleeping. At the same time, I’m deeply disappointed in myself for not getting out of bed. So I roll over. Cycle begins again.” — Rochelle N. 8. “At one point, I stopped taking them because I felt better so I thought I was cured. I didn’t feel the effects of it at first. It was subtle. And then day by day I got worse, the depression got worse. I was raging, lethargic and suicidal at times. I had to come to terms that I’m probably always going to need them.” — Mandi D. 9. “If I forget to take them, I often experience a sudden drop in mood. But in a strange way, I don’t [always] correlate the drop with the missed doses. I think it’s just ‘normal,’ that the meds don’t really do anything for me at all. Sometimes it’s hard convince myself to take them again.” — Ericka M. 10. “It’s like swimming underwater. Everything around you is unclear. People talk to you, but all you hear is static. Then comes the dizziness. The feeling that makes you believe you rode a Tilt-a-Whirl in your sleep somehow. People notice how ‘off’ you are. Once you forget one, it’s easy to miss the next and the next.” — Brendan S.   11. “If it’s for a couple of days, I don’t feel any different. If it’s for any longer than a week, I get moody, experience suicidal thoughts and low self-esteem.” — Nadia B. 12. “I immediately start getting those negative thoughts back in my head along with feelings of extreme loneliness. The thoughts that I am a nuisance to everyone, that no one loves me, that everything is my fault, the suicidal thoughts, the dread of having to go through another day.” — Annie H. 13. “It’s like a waking dream, nothing seems real. Thoughts are fleeting, it’s like walking into a room and not knowing why you [are] there, constantly. It’s like randomly being thrown into a whirlpool. It’s like getting a migraine, but never quiet being able to get rid of it until you take your next dose.” — Bekky B. 14. “I sometimes forget to take them when I’m busy. When I wake the next day, I have zero energy, always feel cold and sluggish. And can’t seem to ‘wake up.’ I walk around all day in a haze. — Kevin M. 15. “My thoughts, my brain, my heartbeat would all feel like they were racing so fast, [like] they were racing each other… yet my body would not be able to move at all. Also, I’d get these uncomfortable sensations I call “brain zaps,” [when] I’d feel these electrical shocks run from my temples, to my brain stem, shoot down my arms and legs and the whole world would completely freeze for these moments.” — Betsi L. 16. “If I miss a dose, I usually feel fine for most of the day, but then it hits me like a ton of bricks. I [get] a headache (but not just any ‘normal’ headache. It’s the buzzing/fuzzy/zapping kind), start to feel light-headed and my stomach [gets] upset. If I forget two days in a row, I basically have to take a day to sleep it off/recover.” — Jackie R. 17. “ I felt great the first couple days… so much so that I questioned why I was on them in the first place. But suddenly, I start to feel disassociated from my life, it’s cloudy and I’m having trouble focusing. My mood drops drastically and I am irritable, sad, withdrawn. Hypersensitive. All I want to do is hide. I feel angry and sick, like a real bad hangover.” — Molly M. 18. “ It felt like I was in a black hole. I was feeling so fragile, it would take a minor thing to make me cry. And when I started, I wouldn’t stop for at least a day. It felt as if me doing my best to get better is actually in vain.” — Alicja M. 19. “ Luckily, I just feel extremely exhausted.” — Sandy M. 20. “Missing a pill or two has never given me a reaction. But abruptly stopping on my own? Withdrawal! [My medication’s] withdrawal included uncontrollable shaking, nausea, general feeling unwell, and brain zaps for me. Bottom line, never just stop taking your meds without proper instruction from a medical professional!” — Meghan B. Thinkstock photo via panimoni.