Melissa Lovitz

@melissa-lovitz | contributor
Melissa Lovitz graduated from the University of Connecticut where she earned a B.A. in Human Development and Family Studies. She holds a Master of Arts in Urban Education Policy from Brown University. She loves country music, gymnastics, coffee, “Grey’s Anatomy,” popcorn and great conversations. You can read more of Melissa’s work at I’m Probably Overthinking This or follow her on Twitter @MelisLov.
Melissa Lovitz

Response to Washington Post Article About Women With RSD/CRPS

The Washington Post recently published an article about CRPS titled “The strange pain that can overcome kids, especially high-achieving teenage girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting.” Here’s the thing about living with CRPS: it’s not interesting, it is excruciating.   This article wasn’t an easy read as a person who lives with this condition, or in general. The story was raw and real in its recollection of the girl’s suicidal thoughts and deep despair. I know that feeling. I could understand. I shared this articles with several of my CRPS/RSD sisters, and for those of us who have experienced programs like the ones described in the article, by the end of reading this piece we were feeling like we were 15 again and meeting our parents by the PT gym at the end of the day. We too easily remembered our own puffy, red faces that were damp from crying, sweating and working incredibly hard all day. We could feel our legs as wobbly as Jello from pounding the concrete stairs for “just 30 more seconds” over and over again. I was transported back to the days where I convinced myself I could do anything for 30 seconds. As I was reading this article I could actually feel the roughness of a towel rubbing on my leg. I pictured the shaker machine – a machine meant to desensitize our bodies to vibration – and felt the heaviness of dread in my throat and chest. Honestly, it makes me shudder. The problem with articles like this is they present only one story and they’re oversimplified. First of all, the characterization of this illness as something that is common in high-achieving girls makes it seem like we did this to ourselves. Or worse, our parents’ ambitions for us got us into this mess. The article goes so far as to describe type A overachievers as “one stone’s throw away from being a pain kid.” This simplification absolutely dismisses our lived experiences. For some of us, our bodies cope with stress in maladaptive ways, i.e. pain. For many of us, our capability to hone our type A strengths is what helped us to overcome this debilitating condition. We were taught to push through the pain. The mantra “If it hurts to do something, that’s what you should do” is how we learned to regain and reclaim our functionality. Discipline and commitment were the mechanisms which we executed each day. Consistency is how we maintain our gains and continue to grow stronger. Those type A characteristics saved my life. In this intense program, we were taught to ignore the pain and prioritize functioning. It was the epitome of “fake it ’til you make it.” One person I talked to told me, “It was engraved in your mind as a kid that you have to act like it’s all fine but no one fully understands that you’re not fine.” As I read this article I felt like my 3D, actual living body was squished into some 1000+ basic words on a page. A huge chapter in my life was minimized to a single story of one person’s “strange pain” that others might find “interesting” – my life and (my) pain became clickbait. “Strange” is pathologizing language – one step away from “crazy” – that makes me feel less believed and like I’m making it up. This actual, legitimate pain is sometimes inexplicable and definitely described and experienced differently by each person, but regardless, it’s tangible and all-too-familiar to me. This isn’t the first time mainstream media has failed to adequately capture the lived experience of someone with RSD. In 2013, Dance Moms featured Nia’s experience with chronic pain. Nia’s mom says, “Nia says she has the pain but when she’s not thinking about stress… she’s fine… I think it’s in her head that something’s wrong with her feet… she has to tell her brain to shut off the pain signals.” This 2:20 segment of TV did not do Nia or our community justice. This mentality practically implies that we are choosing to live in pain. If it was that easy to just shut off our brains and decide we are not hurting, then by that same logic many of us wouldn’t also have depression or anxiety. (It is important to note that the comorbidity of these conditions is exceedingly high.) The bottom line is: this is a real illness. We cannot shut it off. This simplification which occurred on a show that likely has a large audience of “high-achieving teenage girls” was a missed opportunity. Put another way, the public perception of this illness doesn’t align with how it manifests for everyone – with all our realities – and that’s harmful to us. I realized this article and these “media moments” aren’t made for “us.” This Washington Post article wasn’t written for people whose doctors didn’t believe them, who have spent years warping their own experiences in their mind so relentlessly they have convinced themselves they were faking it or that when they were feeling their worst it wasn’t really “that bad,” who felt like their pain and neediness tore their families apart and ruined their friendships. This article wasn’t written for people who know what it’s like to “lose what you are and what you love” and have to fight like hell to get some semblance of the life you knew back, or worse, accept your new reality and deal with the implications or that – “even if – and especially if – it hurts.” I finally realized this article was never going to be interesting to “us.” And, it was interesting to “them” the same way a “freak show” is interesting at the circus. It’s other-ing and other-ing doesn’t take ever take the form of empathy or compassion. It rarely even resembles pity. It feels like on a smaller scale this article evoked the same thoughtlessness and naivety I believe “13 Reasons Why” did when it appealed to a privileged, untroubled audience, and “To the Bone” did for people who do not have explicit experience with eating disorders. Representing shock value at the expense of representation is irresponsible. My painful disease reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. However, I do have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely. The article got one thing correct: “It is not as simple as ‘come for three weeks and now your life is all better.’” Having said all this, I am left feeling energized by the possibility of a different conversation about “us.” My condition and my experiences living with chronic pain have shaped who I am today. I am hopeful to one day hear sentences like this: “This article was interesting to me because of what you shared about your experience. I want to understand you better. How do you relate to this article?” I will look forward to conversations that are powered by the curiosity to better understand my story and a willingness set aside expectations in order to make space for surprise, ambiguity and maybe even genuine understanding. What questions do you have? Let’s talk! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Poike.

Melissa Lovitz

You Know You're a Hospital Kid When...

When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count. When I was in high school most of my inside jokes were with physicians who liked to dance every morning. I got excited about making toga costumes with hospital sheets and having photo shoots with the other girls in the clinic. My main priority, aside from going home, was befriending the nurses so they would steal pillow cases for us to tie dye or extra ice cream cups at lunch. Every so often I reminisce with a few close friends, who I met in the hospital, about out “those days.” Many of us are in remission or have found ways to cope with our illnesses outside of frequent appointments and emergencies. Others are still struggling, but have an amazing network of family, friends, and doctors who are there to support them every moment of their journey. There’s something special and unifying about being a “hospital kid.” There’s something comforting about knowing that other people “get it.” There’s a relief that comes with not having to explain yourself. There’s a sensation of belonging that is revitalized every time I text, “I just smelled Purell” and get a response that reads, “OMG yesss” or “I know what you mean.” When I was talking with my friends, I realized we all had fond memories of our nurses knowing our favorite shows, what we were studying in school, or which activities we were excited to go back to! We all had jokes about which arms or veins were best for blood draws and IV’s. We were all confident we could navigate the hospital so well, perhaps better than our own towns, that we could give directions to other people even to this day; most importantly we knew approximately five ways to get to the cafeteria! So, when I asked my friends to respond to the phrase, “You know you’re a hospital kid when…” here’s what they said: You know you’re a hospital kid when… 1. Your biggest allies are the nurses. 2. You almost always anticipate that your plans will fall through because of an unexpected trip to the ER (or an appointment you forgot about!). 3. Random things like the smell of Purell, concrete staircases, or writing your order with a golf pencil at restaurants remind you of the hospital. 4. Your best friends are people you met in the hospital, and over a decade later you still keep in touch. 5. You laugh whenever someone asks you to rate your pain on a scale of one to 10. 6. You’ve perfected realizing when someone isn’t really “fine” because you too perfected looking “fine” when you’re not. 7. Even though it’s a bit twisted, you get excited if you learn someone has the same condition as you. 8. Getting blood drawn or an IV is “no biggie.” 9. You watch “Grey’s Anatomy” and scream at the TV because that would never happen in real life! 10. Your hospital stories are so intense or dramatic that most people don’t believe you or think you’re exaggerating (e.g., “I relearned how to walk twice by doing PT/OT for eight hours a day for six weeks – twice! It was more difficult than the conditioning we do at gymnastics practice.”) 11. You can explain the spoon theory with more accuracy and detail than your actual homework! If you ask most hospital kids, they’ll say their upbringing inside the walls of the hospital was definitely not traditional! They’ll probably tell you that they’d never wish chronic illness on anyone, but in hindsight they can’t imagine their lives without their stories of medical struggles and victories. Our illnesses don’t have to define us, but the definitely shape who we are and how we encounter the world. Want to participate in the conversation? Add your thoughts in the comment section! There’s incredible power in connecting with others and realizing we’re not alone! We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Monkey Business Images

Melissa Lovitz

Beach Days and Dealing With Chronic Pain

The sunshine feels amazing on my face! I absolutely love the beach. I love the warm air, the sunkissed skin, long conversations with good friends, beach pictures, and the contagious positive energy! I love how quickly time passes, while simultaneously life feels inexplicably slow. At the beach, I can truly relax. Except, I live with chronic pain – so not quite. When I go to the beach, I have to prepare for moments of bliss interrupted by moments of pain. I experience allodynia as a symptom of my chronic pain. That means my nerves are incredibly sensitive to stimuli that would not typically be painful. Some prominent examples of painful stimuli for me are vibrations, lotion, wind, and flip flops. There are a myriad of ways allodynia inhibits my beach enjoyment. I’ll talk about three here. Sunscreen First, I’m a huge advocate of sunscreen, but I’m also notorious for getting burnt at the beach. Here’s why: applying sunscreen, lotion or spray, causes me a lot of pain. Often, the discomfort associated with applying sunscreen is greater than the pain I experience from being burnt. Also, I used to apply lotion as part of a therapeutic regimen to desensitize my nerves; that challenging memory only reiterates my reluctance to eagerly apply sunscreen. I usually get a sunburn when I go to the beach because my skin is so sensitive both to sunscreen and the sun in general. Yes, absolutely, the burn hurts, and there are adverse consequences of sunburns. Yet, sometimes, since I’m so used to pain, I don’t notice I’m getting burnt until it’s too late. And, because it’s so uncomfortable, I tend to push the boundaries on the length of time between reapplying. Sand The worst, by far, is the sand! Most people enjoy the feeling of sand between their toes. Most people, absentmindedly spend their days at the beach digging holes in the sand with their heels or making shapes with their toes. For me, even just the idea of that is practically unbearable. The sand irritates me when even a small amount is on my towel because the feeling on my skin causes me pain. I’m so sensitive I can feel even one grain. It’s especially uncomfortable when it is caked on my feet after it dries. When the wet sand dries and becomes hard and scratchy, most people would simply wipe the sand off, but for me, that pain, even thinking about it, makes the hairs on my arm stand up. I’d prefer to wait hours and hope the sand naturally falls off than rub the coarse, unforgiving sand off my feet. The sand is also a culprit when walking to the water. When I step on hot sand, it’s not just slightly uncomfortable, it’s unbelievably painful. Usually I end up doing a dance, like a jig, jumping up and down attempting to acclimate my feet to the abrupt temperature change. If you’re looking closely, you’ll notice my skin will change colors once it makes contact with the hot sand. My toe nails especially will turn bright red. Later, if I brave the cold water, my legs will turn purple and blue. I’m basically a chameleon. Water Getting in the water presents an entirely different challenge. In New England, even in the summer months, the ocean water is particularly cold. My friends with typical nerve reactions have confirmed this fact. When I step in the water, my body panics. It’s so painful! I have to slowly enter, leave, and reenter the water multiple times before I’m able to submerge myself in the ocean. Even then, it hurts all the way to my bones. It’s sort of like how it feels to be outside in bitter cold, winter temperatures. What’s worse is my body cannot adjust to this feeling because the waves continue to make disturbances in the water — yet another sensitivity. And, the deeper I submerge myself, the higher the waves hit my still warm skin – it’s a catch 22. Sometimes, I’m that person who goes to the beach and doesn’t go in the water. Anticipating and then experiencing all this additional pain and excess stimuli might make some people question why I would ever want to go to the beach. To be honest, there was a time when I opted-out of activities I knew would cause me more pain. I missed out on a lot of amazing moments because of that! So instead, I grin and bear it. Yes, going to the beach is excruciating for me. I need to acknowledge that and be ready. I sometimes spend days after recuperating. However, even with the pain, I have so many great summertime beach memories with friends and family. I can’t let my pain direct which experiences I enjoy — which is why, I’m already planning my next summer beach day, and I can’t wait!

Melissa Lovitz

To The Friend Who Didn’t Tell Me About Their Chronic Illness

Dear Friend, I think you didn’t tell me about your chronic illness because I didn’t create a space for you to share more about your whole self with me. I wasn’t fully open and honest with you, either — I’m sorry. Living with an invisible illness isn’t easy, and sometimes the shame and stigma associated with our conditions hinders our ability to be forthcoming about this important aspect of our lives. But I believe our silence perpetuates the invisibility of our illnesses. I think you didn’t tell me because you’re so used to, and good at, managing your condition on your own. I am, too! I wonder if you thought I’d judge you. I wonder if you thought I wouldn’t believe you. I wonder if you thought I’d be scared. The truth is, I was more scared when I didn’t know how to take care of you that one night after we got home from our adventures downtown. When you stopped responding to me, I wasn’t sure if I should give you juice, call 911, get your test strips, or just wait for you to feel well enough to tell me how I could best help you feel the ground beneath your feet again. When you live with a chronic, yet invisible illness, you become accustomed to putting up a front. With me, though, you don’t have to worry about that. Instead, talk to me! Please. Tell me the signs and symptoms that I should be look for. I need to know what I should be aware of in case there is an emergency when I’m with you! In return, I’ll pledge my friendship, unwavering support and reciprocity. When you share your experience with me, you can expect some comical commiserating, and a whole lot of empathy. You can expect me to ask you some follow up questions so I better understand your lived experience. You can anticipate that I will say “I can relate,” and share my own experiences, too, so you don’t feel too overly exposed or alone. Here are some things I might share: I’ll share that sometimes my pain is so distracting I notice everything! For example, when my pain keeps me up at night, I often debate which is the lesser of the many evils, the constant blowing from ceiling fan in my room or the discomfort from my value brand sheets. I’ll surprise you by telling you about my “sixth sense” — the ability to sense vibrations. Then for fun, I’ll shock you by telling you that you have a text message when your phone is across the room. To be honest, vibrations really hurt me. So, after that I might ask you to please keep your phone on silent when we’re together. I’ll explain that sometimes my pain is so sudden and severe that I retreat quickly — even from those who are closest to me. I’ll be physically present, yet mentally I’ll be somewhere far, far away. I’ll explain that without some sense of relief, I may not even be able to articulate what I’m experiencing or how others can help me. And then while I’m feeling good, I’ll share some tips and tricks for how I’d like you to be my friend in those excruciating moments. Pro tip: Try to distract me! I’ll also share that when the pain subsides, momentarily, I have a really difficult time imagining it actually hurt that bad in the first place. I probably won’t want to talk about it. You’ll also need to know that I’m a really like making plans, but sometimes the plans will change because there are times when chronic pain wins — it’s just my reality. Therefore, I’ll ask for your patience and understanding, and offer this cliché remark — “It’s not you, it’s me.” Finally, I’ll ask for you to please believe me and respect me. I’ll remind you that I’ll always extend to you the same respect and acknowledgement. Revealing this aspect of my life early and often isn’t a call for attention or praise. And, if you share your history of chronic illness with me, I won’t think you’re looking for attention, either. The fact is, if you’re going to invest in being a part of my life, and vice versa, you need to know when to worry and when to let me figure it out. I hope in the future you’ll feel comfortable sharing more about yourself with me. If you tell me more about your chronic illness, it will help me continue to learn how to be your friend, support you and grow our relationship. I realize vulnerability is hard work, and sharing a part of your story requires bravery and courage. I also know you’re incredibly strong. I’m here to listen whenever you’re ready. Sincerely, Your “Spoonie” Friend Follow this journey on I’m Probably Overthinking This. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines. *Sign up for our Chronic Illness Newsletter*

Melissa Lovitz

Poems About Coping With Chronic Illness Written by Teenagers

Recently, I was talking with a friend about how to balance my self-care and advocacy efforts. There are so many important causes we’re all invested in. Sometimes we forget to take care of ourselves, or when we finally do give ourselves attention, we don’t have the skills or knowledge about how best to cope with challenging situations or tough days. At the root of our conversation was the theme of community. We agreed that having a community was essential. If your community is associated with your advocacy that’s great, but if it’s something totally unrelated then you can use those important connections to recharge and continue the great work you strive to do. We all need supports in order to keep moving forward. In Providence, Rhode Island, a group of teens living with a chronic physical illness are embracing this sentiment wholeheartedly. As members of the The Adolescent Leadership Council (TALC), they are taking time out of their busy lives to come together from their various schools and activities to share their experiences, challenges and victories associated with being a leader, a teenager, and living with a chronic physical condition. Together with mentors and clinicians, they’re building skills and conversations about advocacy, independence and assertiveness. TALC mentors like myself often remark about the specialness of this group. We agree that our experiences growing up with a chronic physical illness would have been much different if we had resources like the ones at TALC. As mentors we’ve shared a number of conversations about the qualities and actions of important role models in our lives. Often, we circle back to recollecting meaningful conversations, moments, or experiences when someone “got it” or asked the “right question.” What’s happening at TALC is one just example of how we can createcommunities of people who live with challenges most teens/people won’t even encounter, and learn and grow together. Recently, our teens created acrostic poems to identify strategies they could use to cope in stressful situations. Their insights are incredibly compelling. The teens gave me permission to share their words with The Mighty community and illuminate their voices beyond the space of our group. Maybe some of these strategies will be helpful to other people! Poems by TALC teens about how to cope in stressful situations: A member of TALC shows off his poem. S.H.A.R.E. S elective about information H ave an understanding A dvocate R espect E valuate emotion T.E.A.C.H. T ake a step back E xplain the situation A sk if they understand C orrect if they are wrong H ave confidence in what you say C.A.L.M. Two TALC members discuss their poems. C ontrol what you can A dvocate for yourself L isten to yourself M indfulness and music C.H.A.N.G.E. C an do it, cope with it! H ope for the best A ccept the situation N othing is forever G o with the flow E volve into a stronger person It’s our hope that many more people can benefit from the work of these impressive teens. Their compassion and commitment to being leaders and advocates for themselves and others is truly something to be proud of. I know that I am motivated each day by their persistence and positivity. Like The Mighty, this community is special and celebrates difference and difficulty in a unique and intentional way. Through challenges, and as a community, we’re finding strength and building leaders. We hope you can, too! Members of TALC working on their poems. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Melissa Lovitz

3 Things I Don’t Want to Hear When I Share About My Chronic Pain (and One Thing I Do)

Sharing about my chronic pain with people isn’t a choice I make lightly. I flawlessly, intentionally waver on the line between hyper-awareness and invisibility. If I do tell someone it’s probably because I trust them or because it’s relevant in that moment. Nearly every time I share about my chronic pain, I feel other peoples’ discomfort immediately takes over. I blink and we’re no longer having a mutual, reciprocal interaction. Many people think they can chime in and offer their two cents. Honestly, I find it aggravating, minimizing and presumptuous. Also, I don’t recall ever asking for an opinion. I’m all for having respectful conversations and learning more about each other, but the scrutiny and judgment? Nah. I think I’m good without that. Here are three things I really don’t want to hear when I share about my chronic pain. Translation: Please don’t say these things to me. It’ll make me feel really small, hurt and frustrated. 1. “Have you tried x, y and z treatment?” What I hear: “Trust me, I know better than you do.” Last time I checked, you aren’t a doctor. Right? I have had people suggest pain meds, physical therapy, psychotherapy, biofeedback, hypnosis, nerve stimulation, etc. Chances are, you name it, and I’ve tried it. There is no cure for my condition. When you suggest solutions, while I’m sure your intentions are benign and this is how you’re displaying your concern, I feel like you’re incredibly uncomfortable and don’t know what to do with the information I just shared. I watch you review your mental film reel and quickly recall every time you felt pain and attempt to relate to my experience. Even if you don’t say it, I hear, “ There has to be a solution. ” Which undermines the fact that this condition is chronic — it’s enduring. Melissa’s Instagram post. 2. “You don’t look like you’re in pain.” What I hear: “From my perspective, it can’t be that bad. ” If you say this to me, I’ll inevitably reply, “That’s the point.” Chronic pain is an invisible, physical illness. If you know me well, you know when I’m in more pain. I retreat. My eyes actually sink and I get really quiet. I’m distracted and distant. I can’t focus. Sometimes I’m really fidgety because I’m so uncomfortable in my own body. That’s what it “looks like” when I’m in more pain. But you’re right. Most of the time, I don’t “look like” I’m in pain. Each day I make calculated, conscientious, deliberate choices about how much my body can handle. Whether and how my pain factors into each decision is not a choice I get to have. My pain is always a factor, but it doesn’t always have to be a limiting factor. I don’t “look like” I’m in pain when I choose to run six miles, because of or in spite of a pain flare, and champion each step! I don’t “look like” I’m in pain when I’m doing research or having coffee with friends. Luckily, my physical presentation (in this context or others) isn’t for you to judge. You just get to trust me and accept me. 3. “Wow! You’re so impressive.” What I hear: “I’m filtering your whole life through my perception of what ‘sick’ people look like.” I’m impressive. Yep! But, not because I have chronic pain. I’m impressive because I’m determined, intelligent and a good friend. I’m impressive because I work tirelessly toachieve my goals. When you say, “You’re so impressive,” to me it’s as if I’m watching you add chronic pain to the ledger of my life you have in your head. I feel like you’re adding extra points to each aspect of my life (that you know about). Those extra points push me over the line into your “ impressive” category. I feel your mental math minimizes how incredible I am, and all of my achievements and milestones. I’m already impressive. My diagnosis shouldn’t change your opinion of me and how amazing you think I am. I find these statements so incredibly frustrating to hear. My illness doesn’t define me, but it is a huge and real aspect of my life. Instead, I’d rather hear “ I believe you.“ Follow this journey on I’m Probably Overthinking This. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Melissa Lovitz

4 Reasons I Don’t Want This New Ice Bucket Challenge to Go Viral

Have you heard about the new ice bucket challenge? I have, and I’m not thrilled! This challenge is meant to raise awareness about the pain people who live with complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD) endure. It attempts to proxy, for just one minute, what someone who lives with CRPS/RSD confronts on a daily, minute-to-minute basis. Here are four reasons I don’t want this ice bucket challenge to go viral: 1. I don’t need anyone to experience my pain to empathize with me. My pain has influenced me in so many ways. Some people are thankful for their pain. Others have learned valuable lessons about determination and persistence from their pain experiences. Some people feel (absolutely legitimate) resentment or repugnance when they think about their pain or their bodies. I’ve written on all those things — my words should be piercing enough! The main objective of this challenge is to simulate what CRPS/RSD feels like. I don’t believe anybody needs to experience this singeing discomfort for one second (not to mention an entire minute) to be empathetic. Chronic pain is real. It’s not glamorous or something you try for a minute, recover from and then extrapolate the feeling to imagine it across a lifetime. Full stop. 2. I wouldn’t want anyone to experience such an excruciating feeling. Even on my best day, I wouldn’t wish this pain upon anyone. I believe shared experiences bring people together and connections are fortified through a shared struggle or challenge. I believe this because I think out of struggle comes strength and resiliency. These qualities allow us to connect more authentically with others who share aspects of our stories. Take it from me, people who live with CRPS/RSD should be revered! That being said, I can hardly imagine inflicting pain on anyone in the name of awareness is the best way to advocate for our experiences. I’d prefer a challenging conversation based on a foundation of respect and care. It hurts my heart (a different kind of hurt) to imagine another person voluntarily choosing this pain so they can really understand. 3. This is really triggering for me. When I was in high school, I was a patient at an intensive, rigorous, four- to six-week rehabilitation program for teens with chronic pain. The ideal candidate has exhausted all other outpatient treatment options and has pain that significantly impedes their daily functioning. That was me! Twice! (They call those people “repeat offenders.”) At the clinic, I gained functionality. My mom still cries thinking about the first time I ran after years of dragging my right leg as opposed to walking. I also created friendships I never expected would change my life. My RSD sisters are the people I call during a flare and the only people in the world who understand a pain so deep words cannot describe. The program is an incredible second (or third) chance for many people. It was also the worst 12 weeks (cumulatively) of my life. Many of us block out our time there. It’s simply not something we talk about once we’re out of the program. In order for the program to work, you must do the things that hurt you the most. It’s absolutely twisted. The idea is, you’ll retrain your nerves, body and mind to respond appropriately to a variety of stimuli and physical exercises (I’m getting sick just writing about this). Ultimately, you’ll reacquire normalcy and the idea is to be pain free. One exercise that was particularly challenging for me was contrast baths. They were comprised of alternating three- minute cycles of soaking my legs in ice and warm water. To endure possibly the most undesirable task of my life, I developed the motto “I can do anything for the length of one song.” Fergie’s “Here I Come” was the only song that successfully propelled me through. I can’t listen to that song anymore, but the mantra is something I still employ during tough situations. The challenge post Melissa saw on Instagram. When I saw this picture, a rush of emotions came over me. I was scared, overwhelmed, upset, empowered, angry and hurt. It’s difficult for me to imagine that one of the most traumatizing, painful things in my life is what other people are being encouraged to voluntarily experience so they can better imagine a lifetime of CRPS/RSD pain. To this day, I cringe at the site of an ice pack. I get chills and a physical response recalling the fear and sobbing associated with the inexplicable pain that was an integral part of my treatment plan and meant to make me better. 4. CRPS/RSD isn’t that simple — everyone’s pain is different. CRPS/RSD inflicts emotional pain and physical pain that can manifest differently for every person. I understand how this exercise might demonstrate CRPS/RSD pain, but in real life the experience is much more dynamic and multidimensional. I think it’s too simple to imply that if someone holds their hand in a bucket of ice for a minute they’ll “get it.” Which brings me back to my original point: I don’t need anyone to experience my pain to believe me. I won’t be sharing this picture. If someone else is empowered by this image and its message, that’s great. I want people’s voices and experiences to be visible. I am a huge advocate for awareness — that’s why I write! However, this particular advocacy effort is really unsettling to me. Follow this journey on I’m Probably Overthinking This. The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

Melissa Lovitz

An Apology Letter to My Body With Chronic Pain

Dear body, I’m sorry for wishing you were different and calling you flawed. Living with chronic pain for 12 years taught me to question a lot and dislike much about you. In the chronic pain world, we’re encouraged to constantly ask ourselves, “Are you hurt or does it just hurt?” We live in a world where “find a distraction” is our first line of defense because “find a reason” and “find a solution” aren’t always possible. The absence of an explanation from you about why it hurts makes me crave reason and logic that much more, which directly conflicts with my experience of pain for which there is little semblance of such amenities. I’m sure many other bodies with chronic pain can relate to the psychological scrutiny they experienced when they first sought treatment for why they hurt. Doctors and family members alike were determined to tell me that you’re making it up – it’s all in your head. It’s not in your head! The only things that are in your head are the decisions you make and the ways you live your life each day in spite of and because of your chronic pain. Body, I spend a significant amount of energy and effort fighting for functionality and normalcy, which both come with their own unique consequences. For example, the cultural notions of what a “perfect body” looks like has made it easy for me to find reasons to dislike you. Mainstream media tells me ableism and thinness are indicative of “ideal” bodies; for you, that’s not realistic. It’s hard for you to attain what the world depicts as the “perfect body” because often there’s no explanation or quick fix, and in some capacity your physicality is limited. I’m sorry if there were some days I pushed you too hard. When you live with chronic pain, you’re taught to simultaneously be hyperaware of yourself, question yourself and ignore your pain whenever possible. The dismissive nature of ignoring your hurting and ignoring you can be minimizing to a body plagued by chronic pain. It perpetuates a narrative that suggests I can just think your pain away and that it’s psychological, maybe even not real. I think this makes others perceive your experience as less severe. Living with an invisible illness means if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Likewise, for you, that same narrative makes good pain days much more deceptive. I sometimes find myself questioning your experiences — asking “Is it really that bad?” Sometimes I even feel like those other, bad days are someone else’s life, a dream or something you conjured up. That’s what they want me to think! The problem is, if I’m questioning you, why am I surprised when others do, too? What accommodations, narratives and misconceptions are others supporting or creating about chronic pain that keep us questioning you? Here’s an idea, body: rather than criticizing you, let’s (together) accept your reality, reclaim your strength and demonstrate all the ways you can be excellent — all the ways we can be excellent. This story was originally published on RSDSA. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Melissa Lovitz

The One Statement I Want to Hear From Loved Ones About My Invisible Illness

RSD, which stands for reflex sympathetic dystrophy , is something I’ve lived with each day for more than 10 years. It’s a chronic pain condition. Basically, my nerves constantly (that means all the time) signal to my brain that I’m experiencing pain in both of my legs, from my toes to my thighs. The cycle never stops. That means I live in pain all day, every day. When I tell people this, I usually get the following questions/reactions: “So how can you do all those things?” “Wow, that’s so impressive you’ve accomplished so much even with this condition” “Does it really hurt all the time?” “Is it a psychological thing?” or “Is it all in your head?” “It must not be that bad.” “Can’t you just take medication?” “You don’t look/act/seem sick.” These statements are so incredibly frustrating to hear. My illness doesn’t define me, but it is a huge and real aspect of my life. Instead, I’d rather hear “I believe you.” Living with an invisible illness means that if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Why is that? Why do I need to prove myself to anyone else? Chronic, invisible and physical illnesses can be challenging to confront each day. And when you identify with so many other things in addition to your chronic illness, those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real. For so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal.” We have to because we can’t allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. But what’s challenging is that even when we give off the appearance of being “fine,” we’re struggling. The truth is, if I were to be honest about how much pain I felt each day, it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine. Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day, and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition.” When people find out you have a chronic illness, their disposition towards you changes. Your accomplishments are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate or feel uncomfortable, so we attribute praise. But I’m just me. I’m one ordinary person with this specific challenge. It’s a constant part of my life, but it’s not the only part of my life. I’m a “spoonie.” In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burnout is real. Running out of spoons is why I often “quit” at 9:30 p.m. these days. But that’s my reality. And all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh, validation feels so good! Validation sounds like “I believe you.” It sounds like “What do you need from me?” It feels like genuine understanding. Follow this journey on I’m Probably Overthinking This. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. Lead photo source: Thinkstock Images