Katherine Harris

@katherine-harris | contributor
Katherine obtained her B.A. in Anthropology in 2012 and her M.S. in Health Education and Behavior in 2015, both from the University of Florida. In addition to being an EDS zebra (which is kind of a full-time job itself some days), she works in social services and as a freelance writer. She shares an interfaith home with her wonderful girlfriend and their menagerie, and in spite of the chronically ill struggle, life is pretty darn rad.

Ehlers-Danlos Syndrome: Finding Joy in the Holidays While Sick

If you’re living with a chronic illness, the holidays may be just as exhausting as they are enjoyable, and sometimes more so. Whether managing the added physical demands the holidays place upon us, or battling the emotional strain of the Most Wonderful Time of the Year, the winter holiday months can be draining in every regard. Here are a few quick tips to keep you balanced and help you find joy while you juggle parties, presents and religious and family obligations. Recognize and Focus on What Matters to You One of the hardest things about managing the holidays with a chronic illness is trying to stretch your spoons as far as possible. Even people of able body and mind feel strained and drained during the holidays; tenfold for people with chronic illnesses and disabilities. One of the ways you can combat this holiday fatigue is by knowing what is most important about the holidays to you, and focusing your mental and physical energy there. Maybe you love holiday parties, or maybe you really could do without them. Don’t let anyone guilt you into fitting their mold for what they think is most important during the holidays. If you hate having to make small-talk at the office holiday party, then don’t go! If you’d rather do an intimate Thanksgiving with friends than travel halfway across the country to celebrate with family, then do it. These are your holidays just as much as they are anyone else’s, and you can only live for yourself. It may feel difficult, even selfish at first, but it’s not selfish, it’s self-care. At the end of the day, you have to find what brings you joy during the holidays, and focus your efforts and spoons there. You have finite resources; use them wisely. Make Your Peace With Compromise You may not have the mental or physical energy to do everything you want to do during the holidays, and you’re going to have to make your peace with that. I know it can be really disappointing to have to flake on a party or event you really wanted to be a part of; that is, unfortunately, part of life with a chronic illness. Two years ago, I was recovering from major surgery during the holidays. I missed every single Christmas event I wanted to take part in, save for one. It was really disappointing, but I had to give myself a break – I was recovering from a bone-breaking surgery and a week and a half in the ICU! You may not be recovering from surgery, but you’re still coping with a mentally and physically demanding illness that requires you to make sacrifices and compromises. Maybe you don’t get to go to every holiday party that interests you this year; maybe you pick your top two, or just the one you really want to go to most, and truly enjoy your attendance there. Once you accept you can’t do everything, you give yourself the freedom to truly enjoy and relish the experiences you do have during the holidays. When you stop beating yourself up about not being able to do everything, you start to realize just how good the stuff you are able to do is. Enjoy the Little Things That Make the Holidays Special It sounds like badly worn-out advice, but it’s true; the holidays aren’t about how many church services or parties you can attend, or how many decorations you can put up, or how many presents you can give. Find your purpose and meaning in the little things this year, and they will become the big things, the things that matter most. Immerse yourself in the hopeful melody of the carols on Christmas Eve. Bask in the glow and purpose of the Hanukkah candles. Let the bells of Midnight Mass transport you to a place and time not our own. Sit up late one night sipping hot cocoa and watching the multicolored lights of the tree twinkle. Stand outside in the snow for a few minutes, and watch it fall like silent magic around you. Put down your phone and really, truly take in the wonder of a child’s face as they look up at the tree towering before them. Take in the sights and sounds that only this special time of year brings. There’s no “right” way to celebrate the season – and truth be told, you don’t even have to celebrate at all if you don’t want to. But if you do, give yourself permission to determine what matters most to you, and how you’re going to celebrate it, and what the real meaning of the holidays is in your life. Once you determine how you want to celebrate, on your own terms, the holiday season will become much more manageable, even with your illness in tow. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Sasha_Suzi.

Dealing With the Medical Establishment as a Chronic Pain Patient

The single greatest hurdle I have faced as an individual with chronic pain has not been managing my pain effectively, or spending many long, grueling hours in physical therapy, or paying my tremendous monthly medical bills. The greatest hurdle I have faced as an individual with chronic pain has actually come from the medical establishment itself – the biases of doctors, our culture and the insurance industry. If a patient goes to the doctor with symptoms that are visible and easy to understand, they receive immediate reassurance, belief and support from their medical provider. When the issue is clear-cut, and especially when it is readily visible, the doctor is reassuring and the remedy flows freely. Such has not been the case with my years of chronic pain. When I went to the urgent care center with a broken wrist, nobody doubted that my wrist was broken, or that the pain associated with it was real and valid. They could see the break on an x-ray – there was proof that it existed. But when I went to the doctor because of chronic, unremitting pain in my joints and in my back, the medical establishment as a whole was much less accommodating. I was referred to a “pain specialist” who spent a full three hours interrogating me about my symptoms – their quality, their length of duration, and what exactly I had tried doing to “fix” the situation. His approach was aggressive, and his questions felt designed to catch me in a lie. I did not feel like a patient speaking to her doctor; I felt like a defendant being cross-examined in a court room. And then, on top of it, he refused to do anything to help me, and my insurance would not foot the cost of the visit because there was “no proof” that it was a medical necessity. Most of the people with chronic pain I speak with tell a similar story. Many of us are treated like hypochondriacs at best, malingerers at worst, and generally with some level of disdain. If they believe us at all, they usually think we are blowing our pain out of proportion. After all, how could a person be in such serious pain for so long? How could I function? I must be lying, or making a mountain out of a molehill. It can’t be that bad. It feels like the system is designed to push people with chronic pain to the margins through a many-leveled system of abuse. It starts in medical school, where not enough is done to educate doctors about the reality and validity of chronic pain. Many of the doctors I have come into contact with in a clinical setting, as well as those I know personally as friends, have admitted as much. They just aren’t taught how to deal with the issue with either compassion or objectivity – their personal, subjective feelings about the validity of chronic pain color their treatment. It continues with the negative associations our culture makes with chronic pain. Many people who seek care for pain are painted as drug-seeking, unstable or both, and are denied the medication they need to function reasonably well. So the biases that doctors have individually are perpetuated at the cultural level, and people who genuinely need help managing their pain may not be given any respect or relief. (A further note: people who are drug-seeking because they have an addiction need help, too! They are also struggling, just in a different way, and their problems are also very much real and deserve our attention and compassion.) Finally, the abuse extends to the level of insurance companies, who are often loathe to provide support for the needs of people with chronic pain. The Affordable Care Act has done a great deal to reign in the dangerous biases insurance companies had in denying care for chronic pain disorders, but with Republican lawmakers swearing to repeal the ACA, those biases may be brought back in ways such as: denying insurance to people with certain pre-existing conditions, refusing to provide coverage for mental health disorders, refusing to cover physical therapy costs, etc. We need to push for systemic changes that occur on many levels to address the biggest hurdles faced by people with chronic pain disorders. Changes have to occur in medical schools across the country, to educate future doctors concerning how to provide the most compassionate, well-reasoned care possible to their patients. Those compassionate alterations have to extend to our culture broadly. More humane, realistic portrayals of individuals with chronic pain in our media would help, as would lending a greater voice and platform to writers with chronic pain and health promotion campaigns that legitimize chronic pain disorders. Finally, laws that hold insurance companies accountable to their consumers and protect patients from discriminatory practices must be defended at all costs. We cannot allow partisan politics to strip health insurance coverage from millions of Americans. This is not a Democratic or Republican issue – it is a human issue that affects people from both sides of the aisle, and any problems with the Affordable Care Act must be addressed in such a way that protects the rights, and in fact the lives, of the real people who rely on it. If we can make these changes, then maybe the biggest hurdle facing patients with chronic pain could actually be our chronic pain. We want to hear your story. Become a Mighty contributor here. Thinkstock image via megaflopp.

New Year’s Resolutions for People With Chronic Illnesses

As we move rapidly through the winter holidays and towards 2017, many of us will be contemplating the widely enacted and rarely kept New Year’s resolution. While some people eschew the idea of changing their ways on an arbitrarily chosen day of the year, it seems like most people relish the idea of a fresh start and a blank page in the book of life. They see it as something we rarely, if ever, truly get: a do-over. As a chronically ill person, many of the standard New Year’s resolutions mean little to me. Doing extra healthy meal prep a week in advance takes way more spoons than I have on the average Sunday afternoon, and chronic pain is fairly prohibitive when it comes to keeping a regular gym schedule. So instead of the usual standbys, I’ve thought of a few New Year’s resolutions for the chronically ill, chronically pained person. 1. Be kinder to yourself. It sounds so easy, but it can be so difficult. People with chronic illnesses can struggle immensely with self-love. We expect ourselves to be able to do all the same things as healthy, able-bodied people, and when we can’t, we berate ourselves for it. You’re weak. You’re lazy. You’re a failure. We often speak to ourselves in ways we would never let another person to speak to us or to a person we love. So use that as your rule of thumb. Listen to that little voice in your head, and if you wouldn’t let someone say that to a person you love, don’t allow yourself to keep perpetuating that negative self-talk. 2. Forgive (but don’t excuse) hurtful words and actions. Sometimes, out of ignorance or malice, other people say and do harmful things in regards to our chronic illnesses. They might make harmful comments about your illness or exclude you from events because they assume you’ll “flake.” Or in the case of invisible illnesses, they don’t believe you’re sick at all. Forgive them. Forgiveness is essential to our emotional health and well-being. Holding onto grudges against those who harm us doesn’t do anything for us; it doesn’t change their behavior, and it doesn’t actually make us feel any better. Forgiveness isn’t excusing the other person’s behavior, either. We shouldn’t excuse it. We should have open, honest conversations about why what they said was hurtful and problematic and help them understand the situation better so they can stop hurting us. Forgiveness is about giving ourselves permission to let go of past pain and move forward without that emotional weight tied around our necks. Forgiveness is, in fact, mostly for the heart of the injured party, not the perpetrator of harm. 3. Use spoons in the healthiest way possible. Most of us with chronic illnesses aren’t going to start getting up at “dark o’clock” to go running before work. But we can make small, gradual changes to our habits to use our daily spoon allotment in the healthiest way possible. We can choose, for example, to buy healthier frozen dinners with more wholesome ingredients or to pick healthier snacks like berries and bananas over potato chips. We can start doing more exercise in whatever way is feasible for us. Some people might be able to take up walking for 10 minutes a day or lift small free weights. Consult your doctor or physical therapist and see what kind of healthy adjustments you can feasibly make in your daily life and direct your spoons towards those endeavors. 4. Let go of guilt, and if someone in your life is guilting you, let go of them. Having a chronic illness isn’t your fault. Sometimes having to back out of engagements isn’t your fault. Needing disability accommodations isn’t your fault. You didn’t ask for this. You aren’t faking it. There’s nothing to feel bad about, so let that guilt go. Do what you can do, and when you can’t, let it be. And if you have someone in your life who is constantly guilt-tripping you about your illness, let them go. You don’t need that in your life, and if you have had a conversation with them about how their guilt-tripping behavior is toxic and they still do it anyway, then removing them from your life may be in order. Guilt never helped a single sick person get better. I hope you all have a wonderful, fruitful and “spoon-ful” 2017. We want to hear your story. Become a Mighty contributor here . Lead photo source: Thinkstock Images

Responding to Ignorance About Invisible Disabilities and Missing Work

“We all don’t feel good sometimes, but we still have to go to work and pay the bills.” I stood across the kitchen from the person who spoke these words, dumbfounded, as she patronizingly chided me for having missed several days in a row of work due to a flare-up of a chronic, debilitating health condition — a condition, I would like to add, for which I have ADA accommodations with my workplace already set. I know I have a disability. My employer knows I have a disability. The person who uttered these words to me knows, somewhere in her mind, that I have a disability. But because I am not in a wheelchair, or because of her outlook on life, or because of a streak of unnecessary cruelty that I cannot fathom, she chose to ignore that I am disabled by this disease and shamed me for it anyway. The vast majority of us with “invisible disabilities” — diseases of both the mind and body that are not readily apparent at first glance — have experienced this at least once. It has probably happened to you more than once. It probably happens to you all the time, especially if you need to utilize disability accommodations in school, work, and life in general. Because you don’t “look” disabled, because you may not “act” the way they believe a person with disabilities should behave, because you can do some things but not others, or can do some things sometimes but not all the time, your disability, in their eyes, is not real. It’s an excuse. “I have a disability,” I said in the most cool, even meter I could muster, hands shaking with rage. “You can assume that I don’t ‘feel good’ every day, from now into eternity. I never ‘feel good.’ When I am unable to work, it isn’t because I don’t ‘feel good.’ It’s because I am incapacitated. That is why I have accommodations, for my disability.” My voice wobbled on the last word, but I punctuated it with venom and let it hang in the air between us — not an elephant, not an ignored thing, but a monster unleashed, stalking the room. I wanted it to find her. I wanted its fangs deep in her heart. My disability is not a card I play for sympathy or favors, but if someone challenges my reality, I will unleash it upon them so they can see it for exactly what it is. I am not afraid. I continued washing dishes, angry tears springing up in the corners of my eyes, and I willed them to retreat. I breathed slowly, blinked gently, and pushed them back out of sheer force. I would not cry. I would not sniffle. I would not dare let her see the way her words hurt me. It was only after she left the room that I took a gasping breath and stabilized myself against the edge of the sink. There are few things so demoralizing as having someone look you in the eye and tell you, an individual with a disability, that you don’t have a disability. That it’s all in your head. That you aren’t trying hard enough. That if you just did (fill in the blank here) then you’d be fine. You’re not in a wheelchair. You don’t look like there’s anything wrong with you. You’re a liar. That’s the voice, the echoing voice that follows me in the morning when I wake up and hobble, joints filled with gravel, into the kitchen to make a cup of tea. Liar, liar, liar. It’s not enough that people like her call us liars. Somehow they manage to get inside our heads and make us call ourselves liars, too. But I’m not a liar, and I know that. I know it every day, when my joints crackle and pop like rice cereal. I know it when I dump out a handful of medication — 10 or 11 pills a night, every night, unending. I know it when I sink myself into a hot Epsom salt bath, yet another attempt to relieve the angry pain of daily living; pain that comes not from over-exertion, but from walking across a parking lot, or turning my neck the wrong way, or from simply standing and one of my joints deciding to give out at that moment, stretching precariously without any natural capacity to stop itself. I know my truth. I know my life. I know my body. Half of the struggle of living with disability is the way able-bodied people treat us. So if you are an able-bodied person reading this, please don’t make our lives any harder than they already are. When we tell you we can’t, believe us, whatever it is. We aren’t “giving up,” “quitting,” or “faking it.” When we say we can’t, we can’t. We know our bodies better than you ever will. We live inside them, every day. If you are an able-bodied person reading this, defend us. If you hear someone make a comment about our ability, our disability, or our physical capacity in general, stand up for us. Tell them, “It’s his/her/their body, they know it better than you. If they say they can’t, they can’t.” We may not say it out loud, but having an able-bodied ally come to our defense is such a positive, validating feeling in a world that is constantly invalidating us. If you are an able-bodied person reading this, work with us. We want to be part of daily life. We don’t want to retreat into the shadows because of pain or mental or physical limitation. We may just need to participate differently. Ask us what we need, how we want to be involved, and help us find a way to make that happen. Odds are that it wouldn’t actually take a whole lot of modification for us to be able to participate fully — it just takes someone who cares enough to ask. Be that someone. And if you can’t do those things (or rather, don’t want to, because unlike me, you are actually making an active choice); if you won’t believe my truth, defend me against hurtful people, or work with me to make the world one where both of us can be involved… then at least keep your opinions about my ability/disability to yourself. We want to hear your story. Become a Mighty contributor here .

The Woman Who Loves Me With Ehlers-Danlos Syndrome

I have Ehlers-Danlos syndrome. I also have in my life a woman who loves me — all of my pieces, together and apart (and they are so often apart). Who loves me when my joints slip in and out of place like the breath-holding, heart-pounding moment when cupped hands become laced fingers. Who loves me when I am in too much pain to leave the house, and when I am too tired to keep our date night, and when I am too fuzzy-brained from the meds to remember we had a date night. She tells me I groan in my sleep when I move. I tell her it’s because in my sleep, I can’t control my body’s guttural response to movement. In my sleep, I can’t swallow pain like the handful of pills that keeps my head above water. In my sleep, I am as honest as I will ever be about the way those snap-crackle-pop joints moan under the weight of just living. She gives me that look of hers, full of quiet resolve, and then kisses me gently, and it is the most sincere response anyone has ever given when confronted with the reality of my disease. When an ankle rolls and I lose my footing, she never fails to catch my arm — just in time, every time. It’s like her reflexes were made for this — to love a woman whose own reflexes only ever hurt, who holds her breath when the doctor’s mallet lands on her knee because the dull rubber thud reverberates through her lax, pain-stricken joints like a jackhammer. I keep my face as still as a frozen pond, as unflinching. They never believe me when I tell them how much pain a simple exam causes; the fire over my skin, the howl that runs deep through muscle and echoes long after they walk away. How could this hurt? I barely touched you. Are you sure? Are you sure? They would ask a hanged man if his neck really hurt, or if he might be over-reacting a little. So, fine. Do your worst. Consider me ice. (I have always worn my best poker face with no cards in my hand anyway.) But she makes me feel like I got dealt a good hand. Like even with EDS, when the chips are down, it’s a pair of queens and we win. We beat everything and nothing hurts anymore. For just a second, she looks at me like she can will the pain away, and in that second, she can. She does. She thinks I am brave for living a full life, despite my myriad health problems and their consequences. I think she is brave for staying with me when she could choose to walk away from all of it. I was born with these issues; she wasn’t. Sometimes I am afraid she might decide that enough is enough; every day I am thrilled that she doesn’t. Despite all the pills, the doctor’s appointments, the PT, the scans and studies and blood draws… she doesn’t. Across my shoulder is a tattoo that reads, love is patient, love is kind. In these moments — when I see my reflection in the ice instead of becoming it, when she kisses what hurts, unable to feel it for me but always facing it with me — I think my shoulder needs an addendum: love is brave. Those of us who are chronically ill, we need brave love. We must love ourselves bravely, and be loved bravely by a partner who is able to stand with us and face our disease(s) courageously. Because honestly? It takes guts to love someone who is sometimes overwhelmed by pain, who cancels plans because the hurt — physical, emotional, psychological — is too powerful that day; whose life at least partially revolves around doctor’s visits, medication regimens, and therapies of many kinds. It takes guts to stay. She never mentions it — it’s not in her nature — but I know she makes sacrifices that sometimes she probably wishes she did not have to, in order to accommodate my illness. And I don’t forget that for a second. Every day I look at her and thank my personal deity that this quiet, strong, gutsy woman chose me, and continues to choose me every day, on the good and bad days. She chooses me anyway, disease and all. Because to her, I am not broken. I am complete. I am lovable. I am worthy, disease and all. There is a quote attributed to Lao Tzu that says, “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” I see that every day in the love and devotion she shows me, and that I give to her. Being loved so deeply and bravely by her gives me the courage to face life, disease and all, on the days when I might not have it in me otherwise. And loving her with such profound depth gives me the strength to get up out of bed and do something that day, because I want to be out in the world with her, not stuck in bed watching the world pass us by. Even though that would be easier, and probably less painful, and definitely less exhausting for us to just stay home. I want to live, not just exist, and I want to do it as much for her as for myself. Love is patient, love is kind… love is brave.