Wendy Kennar

@wendy-kennar | contributor
Wendy Kennar is a freelance writer who finds inspiration in her son and from the experiences of her twelve-year teaching career. You can read more from Wendy at www.wendykennar.com and sign up for her weekly blog where she writes about the 3 B's in her life -- books, boys (her son and her teaching experiences), and bodies (living with an autoimmune disease).
Ashley Seymour

Why Chronic Illness Feels Like a Ball and Chain Shackled to My Ankle

Picture this: You wake up one morning and put you feet on the floor. Suddenly you look down and see that a ball and chain have been shackled around an ankle. For the sake of this exercise, we’ll pretend this isn’t too far out of the realm of comfort and you do not need to search the house for burglars. So, you get up and brush your teeth, shower, eat, whatever your morning routine is. By the time you head to work you are already noticing the pain from dragging this shackle around, but there isn’t anything you can do about it, so you just keep going. At work, coworkers notice your ball and chain immediately and ask if they can help. Your mother wants to take it from you and wear it herself. Your friends want to just lift it for a while to give you a break. But those aren’t options because this shackle has been given to you, and only you. You make it through your day the best you can and by the time five o’clock rolls around, you can’t wait to get home and massage your poor aching leg and back, since the pain has creeped farther up your body. Maybe even take a nice hot bath. But, you get home, and everything still needs to be taken care of. Bills still need to be paid, children need fed and be helped with homework, housework and animals need tended to, spouses still need to communicate. That’s when you say, “I’ve really done all I can do today and I need to go lie down.” That’s the moment the ball and chain wins for the day. Now imagine that this is your day every single day of your life. The ball and chain you wake up with each morning may vary in size, but it is always present. There are days when the shackle won’t allow you to get out of bed and other times you can manage to work and still live life with relatively little thought given to your companion of iron. The coworkers that were so alarmed and willing to help out in the beginning are now just getting frustrated that you still aren’t rid of the thing and they’re resenting the fact that your work may be slower. Your friends have dwindled to just a few when the others got fed up with your last minute cancellations and the ones that remain are generally supportive, but without dragging your chain, no one else can truly understand. Your family is frustrated because they want the person you used to be back. You now feel like a huge burden to everyone around you. You feel guilty for needing help, guilty for being this person with this shackle, guilty that you haven’t been able to reach the goals you set out for yourself…And for being financially dependent on someone else because that job of yours just became too much to handle. The ball and chain just got too heavy to heave all the way to the office, deal with it all day, and then drag it back home. Well-meaning strangers may even ask you if you’ve tried things, like a drill or screwdriver, to remove the chain. Now imagine that ball and chain is invisible. To everyone else you look totally healthy. You are the same person as before and are expected to perform as such. Reaching understanding from those you come into contact with is difficult because the only thing they have to go on is your word. They may say you don’t look like someone with an invisible ball and chain. Or that it must be something you’re doing because invisible shackles don’t exist. They may say that its in your mind and a good attitude is all you need. They may tell you that you can heal your body by going vegan, paleo or gluten free and and the list goes on and on. Doctors may say, “Hm. Yes, it looks like you might have an invisible ball and chain, but its not one I’ve seen before. You’ll need a shackle specialist.” Then, the specialist may say, “I have no idea how that got there, but have you tried gaining/losing weight?” You might hear lots of stories of someone who knows someone who had a second cousin with a similar thing and how she cured herself with rainbows and butterflies. You might think that once you have a name for the chain, things will improve. Perhaps things do get better in some ways but worse in others. Your doctor may tell you, “I can’t remove the shackle but I can try to make it bearable for you. Oh, and I can’t treat the pain because it’s a chronic condition and you’ll become an addict. However, we can try to make more days small shackle days so you can live more of a life.” You might hear people tell you that your particular ball and chain doesn’t really exist and that its something people say to get attention. A name does, however, help guide the weight shrinking protocol and helps you find people going through the same thing. Some years later you may look to the past and wonder how in the world your life got to this point since that dreadful morning when you put your feet on the floor and noticed the shackle for the first time. You look down and your constant companion is still there. Still dragging you down, stealing your energy, your job, your social life, your friends, your independence… And you realize that this is as good as it gets. There is not magic spell to cast away your ball and chain. It is here to stay and you just have to learn to live the best life you can while dragging it around. Everything is hard. Everything takes ten times more effort than it should. Everything is exhausting, but you put your feet on the floor the next morning and you get out of bed. You face another day. This is what it feels like to have an invisible illness. Unless you’ve lived it, there is no way to understand the fatigue that comes along with chronic pain. The depression and grief of losing not only friends and family relationships, but also the person you were before. The isolation of trying to give yourself time to rest. The brain fog that comes along with the pain and from the treatments. There is no way to comprehend that, while nothing has changed much on the outside, your heart has been broken hundreds of times from disappointment of failed treatments, letting friends down, letting family down…All the while wondering if it is your fault. The anxiety of wondering how on earth you’re going to support yourself financially or if your doctor will believe you about your burden. There are countless symptoms of chronic illnesses that span across the board – not just pain. It’s a club you can’t be in until you’re shackled, and once you’re in, you can’t get out. I hope this can help bridge the communication gap between those in the club and those standing outside of it. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: retrorocket

Wendy Kennar

Managing Chronic Pain With Undifferentiated Connective Tissue Disease

“My leg kinda hurts, but it’s OK.” That’s my standard answer when I’m asked how I’m feeling. I hesitate to say more. I don’t want to tell them (my husband, my son, my parents) how bad my pain is, simply because there’s nothing any of them can do to ease my pain. I live with an autoimmune disease, undifferentiated connective tissue disease. It means, to some extent each day, I experience pain, fatigue, and weakness in my left leg. I say it’s OK, since it’s my reality. I have to make it OK. Because I’m still going to make dinner. Empty the dishwasher. Water the plants. Help our son identify proportional relationships for his math assignment. The truth, however, is more complicated than my offhand answer. My pain fluctuates. Sometimes I experience several different types of pain within one day. “My leg kinda hurts” actually means much more than that. Here’s what I really mean: Sometimes my leg is tight. That tight feeling you experience when you point and flex your leg, except my calf feels perpetually flexed, and I can’t relax it. Sometimes my leg feels heavy, as if weights are strapped around it and I’m forced to carry them everywhere I go. Everything takes more effort. And as a result, I tire faster. Sometimes my calf has a knot in one part of it. That spot is ultra-sensitive. A wrong move, an inadvertent touch, triggers a “whoa” kind of pain. Sometimes my leg feels weak. It’s not working the way I’d like it to. I think my leg must have invisible shackles attached to it, because I’m walking and moving much slower than I’d like. Sometimes my leg is swollen. It’s hard to wear pants or have any material rub against my calf. It’s difficult to comfortably lie down at night, because I can’t find a position that doesn’t put pressure on my calf. Sometimes my calf feels like it’s getting squeezed. That tight, constrictive feeling you get at the doctor’s office when the blood pressure cuff tightens around your arm. Except this tightening doesn’t ease up. Sometimes my leg throbs. A jabbing, lingering type of pain. The pain you experience after you walked into the corner of the coffee table. Except I didn’t bump into anything. Sometimes my leg is shaky and feels like it will give out at any time. It’s hard to stand at the stove and scramble eggs. I want to just plop down onto our red kitchen mat. But if I do, I don’t know how I’d get back up. Sometimes my leg feels like it’s in someone’s tight grip. Like a tickle gone wrong, it’s more painful than playful. Sometimes my thigh feels like it’s in my body wrong. As if it’s been twisted, the way you wring out a washcloth. And I don’t know how to get it back into the correct position. Sometimes my pain leads to an I-want-to-take-a-baseball-bat-and-break-something reaction. Sometimes my pain brings me to tears. It has me on our couch, rocking back and forth, pulling at my hair in exasperation because I don’t know what else to do. Sometimes my pain causes a frickle-frackle-frickin-friggin reaction. (No curse words in our home.) “My leg kinda hurts, but it’s OK.” It’s not OK. But it is my life. This is my truth.

Community Voices

Can someone recommend a book for family members, to help them understand our struggles. I’m tired of hearing “look what your doing to everyone “.

My mom thinks I should be able to just pull out of my depression and when I told her “what if I had cancer “. She responds that cancer is different!!! No mom it’s not.

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Wendy Kennar

8 Things Doctors Can Learn From Teachers

I write from experience. Twelve years as an elementary school teacher. Ten years (and counting) as a chronic patient. (I live with an autoimmune disease, undifferentiated connective tissue disease.) Only now, however, have I come to realize the similarities that exist between many parent/teacher conferences and many doctors’ appointments. Sometimes, you enter into both situations with a general idea of the status of things. You’ve reviewed your child’s progress reports, and you receive regular communication from the classroom teacher. The conference merely formalizes what you already know. Likewise, you go in for your yearly physical, feeling fine (thank goodness) and knowing your doctor will ask you the usual questions about your overall health and any prescription and over-the-counter medications. Other times, you’re aware a situation needs to be addressed. Whether as a parent or a patient, you enter that meeting looking for guidance, advice and a path forward. That’s where the similarities end, and the experiences radically diverge. This is the point where I think doctors could learn from the way teachers conduct their conferences. Here are eight suggestions and recommendations for effective, positive doctors’ appointments from a former teacher/current patient’s perspective. 1. Stick to your schedule. Teachers don’t keep a parent waiting for 30 minutes. No parent would tolerate it. If a teacher falls slightly behind schedule (three to five minutes), teachers readily apologize for their tardiness. Doctors, however, must believe their patient has nowhere else to be and nothing else to do but wait. When the doctor appears, an apology is noticeably absent. 2. Make eye contact. Teachers have a discussion with parents and show parents their child’s artwork, test scores and writing samples. But, first and foremost, teachers are having a conversation about a child both parties care a great deal about. Teachers look at parents; doctors, however, tend to listen while looking at a screen. Reading past lab results. Typing in an answer you gave two minutes ago. But always giving the impression they’re not fully present, not really hearing you and not really seeing you. 3. Do your homework. Before a conference, a teacher refreshes her memory. She looks over, again, a student’s latest spelling test, reading fluency score and math test. Furthermore, teachers familiarize themselves with any relevant information. A teacher would never ask a parent how many years their child has attended the school. A teacher would know if the child enrolled last year or has attended the same school since kindergarten. Doctors, on the other hand, ask questions about tests and past appointments the doctor should already know about, because the information is readily available in a patient’s medical records. 4. Watch your language. A teacher should never call a child annoying. Or weird. More teachers use more diplomatic words and phrases. Some doctors, on the other hand, skip the polite words and phrases. In my experience, they don’t even use words like “weird” or “strange” to refer to the symptom or the lab result, but instead, put it on the patient. In fact, doctors have told me “you’re weird” multiple times. 5. Ask about the whole picture. Teachers want to know as much as possible about their students. Teachers ask about a student’s health issues and changes at home (birth of a new sibling, divorce). Students are more than a set of test results and grades. Students are children first, whose school performance is absolutely impacted by sleep, eating habits and long commutes to and from school. Likewise, doctors need to ask more probing questions. Sleep, mood, hobbies, job — they all influence and impact physical health. 6. Use “regular” language.  Teachers don’t usually quote academic language within the context of a conference. Especially when certain terms or acronyms have no context for the parent. So rather than mention the school’s “Title I” status, teachers explain what that means (free bus for the upcoming field trip). Likewise, doctors need to skip some of the medical terminology. Put it all into words that are easily understood, that take the mystery out of the experience, and that are relevant to the patient. 7. Follow-up when promised. Teachers make plans and promises and act on them. In a timely manner. Sending home the extra worksheet, or the contact information for a recommended tutor. Responding to a voicemail and/or email within one school day. Doctors tend to use a different timetable when it comes to following up with patients, often needing their patients to give them a reminder in the form of a follow-up email, phone call or both. 8. Stress partnership. School isn’t nearly as effective without the support and buy-in of a student’s family. Teachers need the cooperation and participation of a student’s family. Likewise, doctors don’t have all the answers. And they shouldn’t pretend they do. A patient is the expert on their body. A patient’s concerns and observations need to be listened to and respected by all doctors the patient interacts with.

Wendy Kennar

Undifferentiated Connective Tissue Disorder and Chronic Pain

I have a complicated relationship with my legs, because sometimes they just seem like these “things” that are disconnected from the rest of me. These limbs that aren’t behaving the way I want them to. These appendages that are causing me nothing but trouble and pain. I sheepishly admit that until I was 34 years old, I took my legs for granted. I had always assumed they would be there to do what I needed them to do. They always had been, and I figured they always would. As it turned out, most of my part-time jobs required a great deal of lower body strength. I used to tell my students that I could stand and wait for them to quiet down in line, because I had worked in a flower shop and was accustomed to standing for hours. It was true. My legs supported me as I stood throughout my whole shift. The flower shop didn’t even have a break room; between customers, I ate while leaning against the back counter or in times of real desperation, sitting on the floor. And then there was my part-time library job. At my interview, my future-supervisor warned me that the job would be physically demanding. I emptied the outside book-return bins, pushed carts filled with recently returned books. I’d stand or squat or even sit on the floor to re-shelve the books in their proper places. Then there was college. I did it differently than anyone else I knew, meaning without a car, for more than half my college years. I didn’t often enjoy a leisurely stroll across campus. Getting to the bus stop on time was essential. I quickly walked to and from the bus stops, and often stood when the bus was crowded. On our one international trip, I worried about my high school French being adequate, but I never worried about my legs’ strength and stamina. After our transatlantic flight and riding a bus to the Opera District, Paul and I wheeled our suitcases behind us as we wandered the streets searching for our hotel. On another day, we explored the Louvre and walked from the museum, down to the Champs-Elysées and to the top of the Arc de Triomphe (though I had thought there was an elevator). We walked and explored the city I had dreamed of visiting since I was an elementary school student and had written a country report about France. A couple of years later, I became pregnant, and my body did just as I expected it to. My legs kept me up and going throughout the pregnancy. I took my fourth grade students on a walking field trip six weeks before Ryan was born, so they could meet their pen pals at a neighborhood park. And then, Paul and I walked into the hospital on a Sunday afternoon, my mom’s birthday, just two days after I had said good-bye to my students and I thought I still had a week to go before Ryan’s birth. But that was all before. They say your life forever changes once you have a child. And that is true. But, I can also look back at my life and see another defining moment. Another before-and-after. It was a Sunday morning in July. Paul took me to the emergency room when I woke up with my left calf freakishly swollen and tomato-red and me unable to stand. My calf had felt tight for a few days, but none of us could have guessed that suddenly my life would change and my legs would never be the same. Paul put me in our desk chair and wheeled me out to the car. We dropped Ryan off at my parents’ and went to the hospital. And that was the beginning. Or the end. I’m not sure. We’ve been dealing with this for eight years. That means for most of Ryan’s life, I have lived in pain. And now, most of the time, I’m just angry at my legs. I blame them. All these additional health issues, all the prescription bottles on the kitchen counter, all the doctor’s appointments, all the phone calls to insurance companies and to schedule additional tests. It’s all my legs’ fault. Everything is harder than it used to be. I can’t just do what I want to do, whether it’s go for a walk or get down on my knees and weed my garden. Though at the same time, I know I take my legs for granted. I don’t give them nearly enough credit for all they still do, for all they still allow me to do. I take Ryan to school each morning, and pick him up each afternoon. Paul and I go for our Thursday morning coffee dates, and we hold hands as we walk and we talk. I get in and out of the car each day — taking care of errands, taking care of my family. Yet, for all they do, my legs are also fairly unpredictable. I never know how they’re going to feel, how I’m going to feel, when I wake up each day or as the day continues. Why is one day so much worse than another? Why are some trips to the market so much more tiring than others? Why do my knees creak loudly on some days and not all days? It’s become difficult for me to make plans and then to keep those plans. Because I don’t want to be the party pooper who backs out of a family visit to the Norton Simon Museum or a monthly lunch date with my friend Evelyn. I’m disappointed that my legs didn’t keep their part of the bargain and stay healthier. I felt I did my part, health-wise. I never smoked, only occasionally enjoyed a peach margarita or a sour apple martini, and even those have become a part of my past since my medication prohibits consumption of alcoholic beverages. When Ryan was an infant, I’d lie back on the pillows on my bed, and sit with my knees bent. I’d put Ryan against my knees and, face to face, we’d hold hands. I’d read to him. I’d sing to him. I’d show him family photos in his squishy, Baby Einstein-brand photo album. And the whole time, my legs were supporting my little angel. Now, on the rare occasion Ryan wants to sit on my lap (usually when he’s hurting or sick), I bite my tongue but nod my head and let him. I’m not going to say no to those close cuddles and hugs, but they’re hard to do. I know he’s older and growing, but it’s not just him. It’s me. It’s my legs. I’m just not as strong as I used to be. Now there are days I twist around in the driver’s seat, and place my hands under my left thigh and hoist my leg out of the car. I do it the way Grandma used to. Grandma, who in my memories was always an old woman, who sometimes wore a wig, used canes and a wheelchair, who lost her breasts to cancer and had rheumatoid arthritis. I really don’t know what’s going on inside of my legs. There are times I pull up my pant leg and watch my muscle twitch as if some alien was inside pushing my leg back and forth, in and out. One night it happened while Paul and I were reading to Ryan before bed. Those twitches felt like contractions, each one more painful than the one before. Why? And why did it have to be then, on one of the special nights when Paul was home from work in time to be a part of the bedtime routine? I wonder, though, if my legs are equally disappointed in me and my bad attitude, because I’m not always very nice to them. I stand in front of the mirror, and all I see are flaws. The red, blue, and purple veins. I look with distaste at the 2-inch-long scar on my upper left calf. I often stare at them, looking for swelling and checking for signs of something else being wrong. Maybe my legs are silently protesting when I choose to take the stairs instead of the elevator. But I’m scared. I haven’t forgotten, probably never will forget, the morning I spent 55 minutes trapped in the school elevator. And how a few days later, another teacher looked at me and said, “I wouldn’t get in there again.” But there are days I don’t have a choice. Some days I can push and climb the stairs, and some days I simply can’t. Maybe my legs are mad at me, because though I hang a disabled placard when I park my car at a meter, I still go outside and play handball with Ryan. I lunge for the ball, I reach, I hit, I play hard. My 10-and-a-half year old son wants to play with me, and dammit, I’m going to play with him. I’ll deal with the pain later. I’m not intentionally trying to abuse my body in any way. I’m just trying to live my life as fully as possible. I’m trying to be the mom, the wife, the woman I want to be while I can, because I am terrified that one day my legs won’t work at all, and I will wind up not being able to carry on like I am. Sometimes when Paul calls me on his lunch break, he’ll ask how my legs are. Sometimes I tell him my calf is tight. Sometimes that my knees are stiff. Sometimes I tell him that they’re really heavy. But sometimes, all I can say is, “They’re still attached.” Because what else is there? I’m tired of saying it, of recounting the pain, and I worry that he’s tired of hearing it. Before that July day in 2010, and since that day, I have never really looked at my legs with great appreciation. I always liked my soft brown hair and my big brown eyes, the same shade as my family’s front door. But my legs were just there, no different, no more special than my arms, my ears or my elbows. Maybe it’s time to change that. To make a new deal with my legs. To start a new chapter in our relationship together. My legs are still attached; they are still very much a part of me. And I will try to look at them with the respect they deserve. Instead of focusing on how far I used to walk and how fast I used to walk, I will try to concentrate on the fact that my legs are allowing me to still walk each day. Because that’s all I can do. Take it step by step.

Forgiving Myself for My Limits With Chronic Illness

I am still grieving the old me. I am grieving the spectacular being I used to be physically, mentally and emotionally, and it seems like within the last four years my entire world has been completely turned upside down. I miss being able to accountable to my job, colleagues and work ethic. I used to be able to do whatever I wanted before being chronically ill and within the four years have seen my mental, physical and emotional health deteriorate. I used to be filled with so much anger and rage and then it slowly turned to self pity and sadness. It felt like everything in my life that I worked so hard to accomplish was being ripped from under me. I worked hard to become sober, healthy, happy and further my education but my health completely threw that out the window. I had no idea how to handle my flares and was in a constant state of panic on the inside, but cool as a cucumber on the outside. I had to this fear that I would be viewed as “overly dramatic” if I came in panicking or showed any type of discomfort or pain in fear they would judge me or seeking attention. I never wanted my life to be like this; I always pictured myself being able to keep living care free and spontaneously. You aren’t prepared for the complete life shift that happens when you get diagnosed with an illness that is debilitating and can ultimately be your demise. I find it easier to use my platform to express the changes I face, but also the happiness I still get from everyday life despite all the changes I have faced. I have accepted that my life revolves around medication, hospitals and doctors. I have taken control over my body and I speak up for myself when I feel my voice is not being heard. I take ownership for my mistakes, but also take responsibility for my actions and make time to correct myself to do better for the future. When you get diagnosed with a chronic illness they never tell you how much your life will change once you leave that room, but also your outlook on life will change too. You’re constantly reminded how fragile and short life is when the people who you are going through the same struggles with are dying in front of you. It’s hard; no one expresses how much death and sadness you see and feel. I grieve my old self whenever I am feeling defeated and unworthy, especially when I am reminded by simple task that seemed insufficient to me, but now with my illness is almost impossible to do. I am forced to suck in my pride and ask for help because the things I was capable of doing by myself I am no longer capable of doing. I had to let my old self go, I had to mourn the person who was staring me back in the mirror every day and essentially bury her. I kept comparing myself to who I used to be and that’s not who I am anymore, and I needed to accept that. I am blessed with all the support of family and friends who have never left my side despite everything I have been going through. I don’t want sympathy or attention and it makes me upset when people assume that’s why we tell our stories. It’s not because we want your sympathy, which does nothing for our situation, we want to spread awareness to people that it can happen to anyone. I lived a completely “normal” life before this illness, but it didn’t steal who I am as a person. That will never change or be altered. I want to spread awareness because it’s important to educate ourselves on differences around us to become more sensitive to other people’s situations and feelings. My lupus affects my skin and people stare and make comments about my scars, bruises and skin as if I am able to change any of what happens to my body due to my illness. Love yourself and embrace every bit of you.

Wendy Kennar

Writing Is Easier Than Living With My Autoimmune Disease

1. It’s an invitation. The blank page and/or screen is always there, ready and waiting for me. I can accept or decline the invitation at my convenience. I was not invited to have an autoimmune disease. It was thrust upon me without the option of declining the invite. 2. It’s a gift of power and control. I make all the decisions on the blank page. Font size and color. Single or double spacing. Page numbers or no page numbers. Chronic illness, on the other hand, has taken a lot of my power and control. I can’t control my leg twitching. Or my calf swelling. Or how my body will react to a new medication. It’s a lot of wait-and-see, and I’m just along for the ride. 3. It’s an opportunity to experiment. Generally I write nonfiction — informational posts for MomsLA.com, weekly blog posts (www.wendykennar.com) and personal essays. But a blank page is a chance to try something new, like writing a third-person point of view essay, just because I wanted to try it. It’s not quite so easy to experiment where my body is concerned. Trying a new food could be detrimental to my sensitive stomach, for example. 4. It’s a chance to express myself. On the blank page, I can show different versions of myself. I can be serious. Reflective. Informative. Educational. Based in reality. Or living in a fantasy. My autoimmune disease, on the other hand, somewhat restricts how I can express myself. Sometimes I can be silly and try to moonwalk when my son does. But sometimes I can’t. 5. It’s endless. There are no limits to what I can and can’t do on the page. The only limits are my imagination. My body, however, has definite limits. I can’t walk as far or as long as I’d often like to. Sometimes I can’t even keep standing or sitting as long as I’d like to. 6. It’s easy to make a change. Highlight and click. In the time it takes me to snap my fingers, the document on my computer screen can look completely different. There are no quick, easy, finger-snapping changes possible when it comes to chronic pain. 7. It’s on my timetable. I write when I want to write. I start and stop according to my needs and my schedule. It doesn’t work like that in the medical field. Appointments, scans, even taking certain medications — all dictated by someone or something else. 8. It’s predictable. In writing, there are rules that are followed. If I hit delete, I know the letters on my screen will disappear. If I press return several times, I know my cursor will move down the screen. There are no predictable patterns when it comes to chronic pain. It can hit randomly and seemingly without reason. 9. It’s an example of autonomy. I can write without needing anyone else’s approval. I write when I’m ready to write. As a patient, everything is dependent on someone else — an insurance authorization, a referral from my primary care physician, a doctor’s approval for a prescription refill. 10. It’s a privilege. I know not every woman has access to books or the right to state her opinions in written form. I can write what I want to write, safe in knowing my words and I are protected. However, I don’t consider it a privilege to be living with a chronic illness. It may have lessons for me. But a gift, a privilege, it is not. 11. It’s private. No one has to ever read what I write. Or even know that I wrote it in the first place. It’s entirely up to me. And though I live with an “invisible” disability, it’s not completely invisible. Look closely, you may see me limping. You may notice one leg is more swollen than the other. 12. It’s less-risky. I could write something potentially upsetting, offensive or confusing, but if no one else reads it, no harm done. An autoimmune disease is inherently worrisome, confusing, upsetting. There is the very real possibility of body systems falling like dominos, being impacted by an immune system that doesn’t work quite the way it should. 13. It’s fun. I still marvel at the seeming magic of it all. Taking 26 letters. That’s all we have to work with. But it’s using those 26 letters and putting them in different combinations of words, sentences, paragraphs and pages to create something that didn’t exist before I wrote it — that’s where the fun is. Living with a degree of pain each day is entirely not fun.

Amy Ropple

Getting Through Everyday Life With Chronic Pain

“I don’t know how you stand it.” I hear this from a dear friend who is experiencing pain in the leg, shoulder or other source of injury. “I can’t concentrate on anything. I can’t do anything!” my friend says. She, like me, is doing plenty of doing — working, caring for families and pets, living as best she can. She just can’t see it because of the pain. Her pain is front and center in her mind, and shouts when she moves the offended limb. “I seriously cannot imagine having the pain you have all over, every day,” she continues. “How do you do it?” This conversation makes me feel awkward because it paints me as some superhuman with the ability to withstand pain that knows no limits. I most definitely am not. I feel exceedingly grateful that my good friend understands what I am going through, and isn’t minimizing it or ignoring it. But I also feel sad, like I am trapped on a train and can only look through the window while my friends can hop off later and enjoy the landscape. And I will live on this train. I have no choice. Fast forward a couple weeks and my friend’s pain has become a distant memory, and her life is again more balanced and less troubled. Mine is not, and most likely never will be. How do I stand it? Honestly, I don’t know. I am as strong as I can be, but wish I was stronger to combat the constant pain and fatigue I experience. I am afraid to stop and think about how I “do it,” because if I do, I might fall apart and the pieces might not go back together the same way again. I feel like all my painful parts are taped together inside with cellophane tape, and when it peels and snaps I just quickly apply another piece to hold my body and life together. From the outside I am now a tall, middle-aged, heavyset plain woman. I can “pass” as relatively normal. My deformed feet can be hidden in shoes, my weird knees can hide under pants, and thankfully my irritated sciatic nerves do not glow in the dark. I might look strong, but all it takes is a sharp cut of pain to ruin the facade. Today I dropped a can of cat food on the floor and when I bent to pick it up, I was rewarded with such a shocking level of pain I cried. Actual tears. It doesn’t happen often, but when it does it scares me. My poor cats fled the scene, and I left the can on the floor until my medication kicked in and I could get at it more easily. Play this scenario out and you can understand my unruly domestic issues. I’ve learned to let things go to a level that “normal people” would not be able to stand. I live in a messy, chaotic environment in which tasks are prioritized and few get completed. That is how “I do it.” I grit my teeth throughout the day, enjoying my job to the fullest because I truly love it. I know there are times when I look like I am angry or upset, but I am not. It is just my face unable to hide the stabbing pain. Some colleagues at work understand, and some make light of it and tell me about their own pains and how they deal with it. Some even treat me like I am a hypochondriac. I’ve learned to be very careful who I talk to about my real troubles. There are times I want to just sit down and cry because of the pain, but then I look around me and realize the gift of my job makes me strong. I take a big breath and keep going. That is how “I do it.” I focus on my family of dogs, cats and parrots, who unfortunately have to live with my waxing and waning pain levels. Thankfully, they are very accommodating. The dogs and cats love the extra naps I have to take, and the birds are very patient when breakfast time is late due to a rough morning. Despite how I feel, they need food, exercise, love and clean bedding, and this cannot be ignored. Delayed a bit, maybe. But not forgotten. That is how “I do it.” I live alone. Very alone. I have many dear friends and family who make life worth living, but basically I am an island and this journey of ill health is all my own. I’ve lost several important relationships over not being physically well, including an ex-husband who would not believe the disease was real when I was first diagnosed. Every day the responsibilities of living are completely my own. In bed comfortably and need to get meds that are downstairs? Need laundry done? Have no food and need to go to the store? Balance the precarious finances of living? No help available. It gets exhausting and hard. But somehow life goes on, and I get things done by putting one foot in front of another and plodding painfully through each day. That is how “I do it.” I am worried about the day when I cannot just “do it” anymore. When my world falls apart and I can’t bend to pick up the pieces. When the tape stops sticking. That worry is almost as difficult to manage as the physical symptoms I experience. I push the thoughts back into the Room of Denial and force the door shut. I stop thinking about what I can’t change, my pain, and hope the lock holds. That is how “I do it.” Good luck fellow pain travelers, and may you get to hop off the train, at least for a little while. Keep doing it.

The Importance of Connecting in the Chronic Illness Community

I can’t count how many times I’ve been told it is not healthy to have continual interaction or create bonds with others who cope with chronic conditions. What others fail to see? A group whose lives parallel in many ways regardless of diagnoses. The connections formed support unforeseen growth, fulfill longing for understanding, and provide a place for relating, empathetic listening, and one of the largest cheer squads I’ve seen when a member propels forward in health or personally envisioned endeavors. Many different bonds — whether you empower and educate by leading with your story or prefer to interact behind the scenes, you never know how many lives you’ve touched by channeling bravery to help those struggling silently. It doesn’t mean that you don’t value your current supports, however, as I’ve been told honorably the contributions you’ve or I’ve made as an Internet peer have brought hope for others futures and motivated resilience to continue to live a life they previously felt was so worthless they no longer wanted to be part of. Flourishing these happenstance online connections offline is something as beautiful as the community you have found yourself belonging. One of the things I encourage often is to remain true to who you are and stay in touch with your passions no matter what may come your way. I adore writing whether it’s creatively, academically, educationally or reflectively. My fuel for writing is accompanied by a love for stationary from finding “ideal” pens to elegant paper or cards. Shortly after joining Instagram, I combined the two rekindling my love for both and connecting with others in the community in a meaningful yet old-fashioned way. I set pen to paper when I am able to post letters to others globally to chat about what we adore and to provide support in many forms (validation, motivation, celebration). The beauty of connecting a couple of my hobbies with my passion for our community is that although it brings me joy to be a part of your lives in a small way, I am hopeful those who receive letters are met with warmth and whatever they may be longing for at the time. Why am I humbly sharing about this act? It’s not for praise nor admiration, it stems from a place of raising awareness to address what some may not be privy to seeing. In a world where we are almost always connected in some fashion, I think there is something wonderful in the possibility of strangers or online friends to be able to foster connections where there is no expectation for something in return — the value for both is in the kindness itself. Where distance nor time has no bounds on what you share. How relationships or someone’s presence does not always require physicality to convey compassion, support, love or appreciation. There is immense value in sharing your strength with others and shining a light on the amazing things they bring to life as they are likely already aware of the strife they face. Each of you bring something amazing to this world, so I encourage you to reconnect with your passions or make the leap to try new ones you’ve had your eye on. Simply taking time for a few things you love may foster a place of love, hope and happiness for others who are silently watching or value your connection. Living with chronic conditions brings an unforeseen amount of solitude and plenty of variability. It is through courageous sharing and dancing with vulnerability where we collectively and individually create a place where those who may no longer feel they’re walking alone. Each of our experiences are as unique as we are and so are the supports one may access. After diagnosis, there is an adjustment period for you and your current supports to learn the best way to support your lives. People who were always by your side now watch from the sidelines or leave you be. It’s not about searching to fill the void from those that leave, instead, forming connections internationally provides the opportunity to form ties that otherwise would’ve never been. Focus on the people who choose to be there and see you as a valued human being. Channel your feelings and despite others naivety, never shy away from being who you desire to be. You have value in this community whether you bring positivity, share reality or seek empathy. Don’t miss out, reach out as there are many here, each of us at different stages to support you alongside your journey.

Wendy Joyce

8 Things I Want You to Understand About Rheumatoid Arthritis

I’ve been living with a diagnosis of rheumatoid arthritis (RA) for two-and-a-half years, but looking back, I probably had RA for much longer than that. Since my diagnosis, I’ve had a significant decline in my physical health. As an avid athlete, the physical changes of RA have been very difficult for me to deal with. I continue to attempt to keep up with my activities. I’ve learned to appreciate the good days and do what I can on the bad days. Sometimes, a day on the couch is the only activity I’m able to do. What’s been even more difficult for me is the lack of understanding and support from some of the people around me. Maybe if they knew more about RA and maybe if I had the opportunity to share some of the things I wish they knew about RA, they’d get it. Here are eight things I want people to understand about living with rheumatoid arthritis. 1. My disease is invisible. That means you can’t see it. When I’m feeling well, I’m going to run, lift weights, waterski, kayak, cycle…and when I’m not feeling well, I’m going to try and I will make adaptations. Believe it or not, all this activity is good for me. Movement keeps my joints mobile. 2. RA is not your grandmother’s arthritis, unless she has RA. RA is a progressive, systemic autoimmune disease that affects every organ in the body. RA should really be called rheumatoid disease. 3. I can be forgetful sometimes. Chronic inflammation, like that found in RA, can affect cognitive function. Researchers aren’t completely sure why, but it probably has something to do with the elevated products of inflammation in the bloodstream. Hey, at least I have an excuse! 4. At least it’s not cancer, but I can anticipate the likelihood of a shorter lifespan and the increased chance of developing cancer. I can also anticipate the possibility of becoming disabled as the disease attacks my joints. 5. Yes, I need those strong medications to keep my disease under control. No, I can’t cure RA with food, vitamins, essential oils… and please don’t tell me about someone you know who has. While diet, supplements, oils, etc. haven’t been proven to treat RA or provide symptom relief, I am willing to try things that may be helpful for symptom control. 6. While most people associate pain with RA, fatigue is the most common symptom of RA. I have to rest often and I may not be able to keep up with my activities the way I used to. I may even have to cancel plans when my disease unpredictably flares or when I’ve overdone it the day before. 7. I’m not faking it. Just because you saw me out running or maybe you saw my post on social media doesn’t mean I’m not having symptoms. Don’t judge me. Staying active and positive is important to my mental health. 8. Slowing down and taking it easy is the hardest thing I’ve had to do. I’ve lived my life being able to tackle whatever I wanted. I’ve been described as tenacious, stubborn, and determined. I’ve run marathons. I became a mom after years of infertility. I became a nurse practitioner at age 45. This is the first obstacle life has thrown in my path that I haven’t been able to defeat. But with everything else I’ve encountered in my life, I’m going push back as hard as I can. I will not let RA win.