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Alexis N Misko

How Library Books Help Me Survive Long COVID

I lay on my side on the couch, my face centimeters away from a plate of canned green beans, every cell in my body shrinking in decay, my bones disintegrating. My arms, functional just yesterday, are useless sludge. I heave one hand up and push a few green beans into my mouth without moving my head, resting before I am able to chew. A fork sits outside my line of vision, so it does not exist. I am spectral. This is long COVID after a year and a half. My husband comes in, carrying an armful of books from the library. He sits down and begins to read to me out loud, an act of love performed frequently since I became ill. He reads poetry about nature, a trashy thriller we both mock, magazines about space, Toni Morrison, a book of bizarre short stories. Severed from the hockey games and concerts we used to attend, unable to even walk down the street, watch a whole movie, or reliably sleep in the same bed together, we connect through this ritual formed via the library. Becoming disabled by a condition that is trivialized, ignored, politicized, and judged is to be marooned in a parallel universe. The former body and former life slip away into quicksand; the surrounding society remains in all its selfishness and vitriol. It is not survivable without immediately claiming a reason to keep waking up. I have claimed books. I download library audiobooks like other people shop online. While the physical act of reading and concentrating is exhausting and induces post-exertional malaise, listening is more tolerable. I “read” a historical fiction book about Versailles, remembering walking miles around Paris, my husband spilling crumbs from his macaron pistache on the train, riding a bike past palatial fountains. I give in to the grief, unsure if I will ever again board a plane. I read about Rosemary Kennedy, born disabled but very functional, who was lobotomized at 23 before informed consent existed, a sickening decision based on eugenics. I think about how much has changed since then, and how much has not. I read Virginia Woolf, who struggled with post-influenza chronic illness, and a romance novel with a disabled protagonist. I fight my own internalized ableism. I read what I never made time for: Zora Neale Hurston, John Irving, James Baldwin. I read classic children’s tales that make me smile, and about a woman in Tokyo who, defying social expectations, is perfectly happy to work at a convenience store her entire life. I read about los lectores, who would read out loud to their peers in Cuban cigar factories, passing the tedious hours. I read about chess, religion, art, and magic. I look for magic in the mundane, even though it is hard to find through the fog. I look forward to a new release, one small investment in an uncertain future, placing it on hold so the library can tell me how many weeks to keep trudging along. Words coax me to remain connected to the outside world, transporting me, living for me when I cannot. Books are an easy topic when I am able to briefly interact with friends and family, when the reality of illness is too difficult to mention – a safe topic when others are in denial about what I mean for their own vulnerability and humanity. I read the autobiography of Nelson Mandela, admiring the immense strength it must have taken to build a purposeful life from a 27-year political prison sentence. I feel a kinship with stories of people who are trapped, catapulted into lives they did not choose, involved in natural disasters. I read about a man who feels deep longing and abandons society to trek through the Alaskan wilderness. I remember being dropped off on a roadside by a Denali National Park bus, hiking out into the Alaskan tundra, never once wondering whether or not my body would carry me back. My husband checks out recipe books from the library, since I can no longer do the cooking I once enjoyed, watching helplessly as the life of his independent, adventurous partner shrinks to the size of the living room, stranded on his own type of island. He borrows video games to distract himself while I constantly rest: a conscious act of maintenance requiring grit, earplugs, and an eye mask, complete isolation, a torturous stillness for a body that is screaming. I discover I am able to read short physical books, reserving from the juvenile non-fiction section, making my way through small poetry anthologies. I learn to watercolor with an instructional book from the library, though only in increments of 15 minutes. I hold space for the people without help who do not have the privilege of books, because every solitary ounce of their energy goes to keeping themselves clean or fed. I do not find solace in stories of sick people who are immediately believed and given a clear treatment, their suffering granted an expiration date. I instead become furious and envious. The medical care of a misunderstood chronic illness is medieval, reminiscent of books about prairie settlers lying for weeks in their beds with malaria or scarlet fever, too weak to warm a kettle, waiting for a single doctor to ride by and save them, or waiting for death. I add books by Laura Hillenbrand and Susanna Clarke to my list, award-winning authors living with myalgic encephalomyelitis. I connect with the resilience they find in enclosed corners of life, how they exist when wreckage cannot be rebuilt but must be sustained. I search the online catalog for HIV activists – Marina Alvarez, Katrina Haslip, Peter Staley, Vito Russo – whose dedication to changing the patient role in science and research changed medicine, providing an outline for long COVID advocates of today. Yet I am often reminded that few healthy people understand the truth: for 7.7 to 23 million Americans, long COVID is not a prolonged recovery from a virus, but a chronic disease of its own pathology. Wishes to get better soon and suggestions of common sense solutions do not land as they are intended. Even if I somehow find healing, never again will I want to sit across from the people who treated the virus that maimed my body and destroyed the life I knew like a joke. Many of us are now diagnosed with debilitating, incurable, often untreatable illnesses triggered by viruses such as myalgic encephalomyelitis, dysautonomia, postural orthostatic tachycardia syndrome, mast cell activation syndrome, small fiber neuropathy, fibromyalgia, or craniocervical instability. Decades of ignorance and neglect have led us down a path toward this mass disabling event, a path that those with long mono, long flu, long Ebola, etc. have walked before. We stand upon their shoulders, straining to reach through the bureaucracy together and toward a better future, one that will only happen if we demand it. Hanif Abdurraqib, a local author of national acclaim recently featured by the library wrote, “But the way I think about grief is that it is the great tug-of-war, and sometimes the flag is on the side you don’t want it to be on. And sometimes, the game has exhausted all of its joy, and all that’s left is you on your knees. But, today, even though I am sad, my hands are still on the rope.” And so I wait, for research and science and medical treatment, sequestered in my home and body and the grip of this never-ending sickness, trying to live in echoes and shards. I keep hold of the rope. And on the worst days, I know that I will never run out of books.

Melena S.

How Anorexia Recovery Is Complicated by Mast Cell Activation Syndrome

I started my eating disorder recovery when I was 16 years old. I spent the next nine years navigating the ups and downs that come with that. In treatment I was introduced to the concept of intuitive eating and was discouraged from avoiding eating things “unless I was allergic to them.” Haha. Fast forward, nine years later at age 25 I was diagnosed with mast cell activation syndrome (MCAS). MCAS is an illness that causes you to have allergic reactions to things you’re not necessarily allergic to on lab tests. This past month I have had to swap out my mascara, my laundry detergent and stop wearing the brand-new Yoda socks I bought at Target a few days ago because my mast cells decided they are all enemies. MCAS reactions can look like so many different things and they aren’t always symptoms that you may consider an allergy symptom. These may include low or high blood pressure, nausea, stomach pain, bronchospasms, the list goes on. And probably one of the most confusing parts of MCAS is that the things you react to and the severity of those reactions can change. Randomly. Whenever the mast cells want. Anything from scents to foods to temperature, you name it, someone with MCAS has reacted to it. You may already see the problem with that. Before I became sick enough that I was referred for an evaluation regarding my symptoms, I (tried) to eat whatever I wanted. I did not have an eating disordered mindset. I was, essentially, good. But as my MCAS progressed, I had to change virtually every aspect of my life. And that included food. I also did not know this would be permanent. When I first had to navigate eating disorder recovery and my new MCAS diagnosis, there was nobody who knew both illnesses. There was no ED and MCAS dietitian out there to help me, even though people kept suggesting I see one. They kept recommending a provider that does not exist. And truthfully, it was soul crushing to go from solid anorexia recovery to a medically recommended restrictive diet. It was not quick, it was not simple and it wasn’t fun. When I first started learning how to navigate mast cell activation syndrome, I relapsed back into my eating disorder. I didn’t tell anyone for a very long time, and it felt like a trap to say anything due to the narrative that often surrounds eating disorder recovery. “Intuitive eating” looks different for everyone, especially when you’re chronically ill. I did eventually find ways to cope with both aspects of my health. Here are some things I wish I knew and did regarding my eating disorder recovery when I was first diagnosed with mast cell activation syndrome: 1. I did not have to figure everything out in 24 hours. It is impossible. The first thing I wish I did when I was diagnosed would’ve been to grieve my idea of what recovery would continue to look like for me. I wish I acknowledged how difficult balancing anorexia recovery and MCAS would be instead of trying to power through it as if it were an action-oriented checklist. 2. Talk about it. I didn’t bring it up because I didn’t think anyone would understand what I was going through or believe me that it wasn’t just another eating disorder behavior that was fooling me. I didn’t bring it up because I didn’t completely understand either. And at times I questioned my own reality. I believe that if I talked about it that maybe the stress wouldn’t have ended in a relapse. For me, this relapse wasn’t driven by thoughts around my body and was instead due to the fear of what would happen to me if I ended up having a life-threatening reaction to something I ate. This still led to unhealthy behaviors that negatively impacted my health. 3. I wish I knew that I would start to figure things out. I don’t currently have wonderful symptom control, but I have more knowledge around my triggers. I have gotten foods back and a lot of my GI issues have gotten better with treatment. Facebook groups and other online spaces are great resources filled with people who get it and can provide so much insight. Other members of the groups have given ideas that have really helped me. And even if there isn’t something else I can try, someone else usually understands the frustration or is going through the same thing. The emotional support and validation can help to feel less alone and I wish I knew these groups existed when I was first diagnosed. My world didn’t end. It just looks really different now. I had to let it fully saturate through my brain and validate myself that I know this is something I have no choice in doing. I tell myself that it is OK my recovery looks different than what I expected it would when I stopped every level of ED care. Because it is! Recovery and MCAS can coexist. And it’s a pretty badass accomplishment. If you’re going through this, please know you are not alone and you’re doing the best you can in an incredibly complex circumstance.

Chrissy O

Why I Have to Keep My Chronic Illness a Secret to Keep My Career

Before my identity was intrinsically intertwined with my (sometimes visible) invisible illness, I identified first and foremost as a performer and singer. I started at a very young age and it became my dream to perform as my career. Long story short, my dream is in the process of coming true after working hard for many years through university and postgraduate study. I have had health problems since I was 3 or 4 and it only slightly impacted my performing career as I was growing up. My health got significantly worse in my early to mid-20s and I was subsequently diagnosed with hypermobile Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, and polycystic ovarian syndrome (with possible mast cell activation syndrome). I am open about my illness with my family and friends and I am pleased to say that they are all pretty understanding and supportive of me and my limitations and compensations. But in order to continue to give myself the best opportunity to succeed, I have to keep my illness a secret in my professional career. Like other industries, the performing arts openly strives for perfection: perfect technique, perfect execution, the perfect production. Increasingly, they strive for hyper-realism, which means no obviously fake stage falls, more realistic stunt-like actions, and more modern costuming. My propensity for dislocations, sprains, and injuries, plus my current inability to run or jump due to still recovering from knee surgery means I can struggle to perform certain actions that the director wants. I also can’t hide any braces or taping under costumes so easily. Mostly, I can explain it away as a recent injury (which is often the case anyway!), but the more work I book, the more I’m going to struggle to explain it away as a current injury. I would dearly love to be open about my illness and the compensations I need to make, but I’m afraid that due to the competitive nature of the industry, I’ll never be offered work again as I would be seen as “damaged goods” and unable to fulfill the director’s vision. I hear you asking, “Why don’t you find another career that takes into account your illness, where you don’t have to hide?” For one, I’m a stubborn person and I’m not willing to give up on my dream until my health forces me to do so. Secondly, the performer’s lifestyle that I’m chasing actually works really well for me. It’s essentially working in a project-to-project environment where I can take a break in between. Also, the rehearsal days are approximately 11 a.m. – 9/10 p.m. with lunch and dinner breaks in between, and sometimes you’re not required all day. I’m not a morning person, so this works with my body clock. During performance time, you have the whole day free and only perform every second evening for several weeks at a time, so I can perform to my best as I can rest adequately. The fact that I’m spending time doing something I love also energizes me, so I get more hours a week of usable energy than I would doing another job that I’m not passionate about. I also know from having done retail, hospitality, and office work that my body suffers in those jobs, so for my health, it’s in my best interest to keep away from that type of work. So, it’s worth chasing a dream that works with my body and how I work best. As much as I love what I do, I hate that I have to keep such a secret. Not just because I feel a tad fraudulent, but also because it is very taxing to hide things. If I’m in pain, or struggling with a move in rehearsal or on stage I have to grin and bear it. If I’m struggling with fatigue, I can’t show it. I can’t talk to anyone about my struggles, or as sometimes has happened, my successes where I have pleasantly surprised myself. I have loved ones at the end of the phone that I can talk to, but having to wear a mask for those long days for weeks, sometimes months at a time, is just awful. I wish I was famous as once you have “made it” and your name is respected in the industry, they don’t care what concessions they have to make, as long as your name is on the poster and will draw the crowds. I can’t wait for the day I can be open about my illness without fearing for my career.

Autumn Aurelia

12 Disabled Artisans Whose Creations Make Perfect Gifts

A year has passed since I wrote my last Mighty Gift Guide and in that time, I’ve spoken to numerous makers and small business owners about the weirdness that has been 2021. At the start of the COVID-19 pandemic when many countries went into lockdown, there seemed to be an increased appreciation for shopping small and local, but as we moved out of lockdowns and physical shops started to reopen, that support has most definitely wavered. As a chronically ill small business owner, I know, first-hand, how crucial the success of my business is to me. Sure, many small business owners can say that, but for so many of us living with a disability or illness (whether that be physical or mental) our businesses came about because we were unable to find a job in the more “traditional” way. Physical health limitations aside, I’ve spent the past 10 years unable to leave the house alone due to complex post-traumatic stress disorder (C-PTSD) and obsessive-compulsive disorder (OCD) and, as such, my partner (who also acts as my carer) accompanies me everywhere I go. (Imagine trying to find a job alongside your carer.) Factor in my regular flare-ups with endometriosis and fibromyalgia, it was quite honestly an impossible task trying to find an employer who would cater to my needs, which is why I decided the only way I’d be able to find a job was if I created one for myself. Without my small business, I’d be back to where I was just a few years ago: trying to survive on minimal government benefits and in a constant battle with those who provide those benefits because they weren’t willing to understand the apparent complexities of my needs. My story isn’t unique. Most chronically ill small business owners I know share a very similar story — one of passion, yes, but also of absolute necessity. These small businesses are a way of surviving a society that doesn’t accommodate disabled and neurodivergent folk. They are how we pay our medical bills, education, food, and rent. So with all that in mind, let me introduce you to 12 chronically ill/neurodivergent small business owners who are working their arses off trying to provide for themselves and their families, and grow a business, while also managing their conditions. 1. Killrbangz Confession: In the process of writing this article, I may have got sidetracked by these BREW-tiful earrings and snuck away to purchase a pair for myself. Who can blame me though?! These shiny, iridescent Sick Witch Cauldron Earrings are the ultimate magical gift for your chronic coven. Owner and creator of Killrbangz, Marie (she/her), is a disabled maker of acrylic jewelry. Her business journey began after she was forced to leave multiple jobs in the motorbike industry and domestic violence services due to declining health after a motorbike accident. Marie, who lives with Ehlers-Danlos syndrome (EDS), told me that using her illustrative skills felt like an accessible way to start her own business. Her designs cover a range of themes, from vintage style to B-movies, western and biker style to gothic architecture and desert landscapes. With a love for the “bad girl” movie icon, Marie’s goal is to inspire confidence with her designs and empower the wearer. Being able to work from home (especially during the winter months) is crucial as Marie lives with nerve damage along her left side, which impairs her mobility and causes extreme sensitivity to temperature. Working from home allows Marie to make jewelry with her comforts and aids around her. Marie also lives with postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome, asthma and (likely) CRPS. She’s an all-around badass chronically ill babe who fights for inclusivity for the disability community. Keep up with Marie over on her Instagram. 2. Nameless Art I was absolutely mesmerized by Nameless Art’s paintings and honestly struggled to choose which to feature. Ultimately, the raw emotion and tenderness of “Hold” gripped me from the moment I saw it and I felt it would have a profound place on The Mighty as so many in this community live with depression and, I think, can relate to the darkness (but also hope) within the brushstrokes of this painting. Personally speaking, I joined The Mighty because I craved connection with others who understood my darkness — I think “Hold” tells a similar story. The artist, Jamie (she/her), who lives with borderline personality disorder (BPD) told me of her 20-year struggle with the American mental health system (many of those years being due to a misdiagnosis of bipolar disorder — an unfortunately all-too-common occurrence). Jamie has sold her work on the streets of New Orleans for the past 18 years now and wishes severe mental disorders, like BPD, were more openly acknowledged. While checking out Jamie’s work, I also came across her blog where she writes candidly on themes of depression, capitalism, and more. Follow Jamie’s work on Instagram. 3. RaynCloudArt I was most definitely spoiled for choice when it came to choosing what to include from Rayn’s (they/them) store. Not only do they sell original work, but they offer rich reproductions on heavyweight fine art paper for those who can’t afford the originals. Rayn also sells their work as postcards and stickers, which I thought would make really beautiful stocking fillers for friends and family. When I asked Rayn what “Conquer” meant to them, they told me that they painted it to sit alongside their Beautiful Bodies collection — a collection that explores beauty in bodies of all shapes, sizes, and abilities along with what those bodies have experienced. “Conquer captures a body with a scar from a partial mastectomy highlighted in silver ink to draw attention to something that is often an insecurity for people who have experienced it. I wanted to show it as a beautiful thing instead of something to be ashamed of.” Rayn is an autistic artist who also has a tic disorder. They create body-positive artwork for all bodies, paint portraits, and custom pet portraits. Follow their work on Instagram. 4. Ingenue Candle Company Inspired by Disney’s The Little Mermaid, this 9-ounce, 100% soy wax wooden wick candle would make a sweet gift “For Bright, Young Women.” Maker and business owner Jayden (she/her) creates candles and fragrances inspired by fictional characters or historical figures, primarily from Disney and Star Wars. Jayden created her business earlier this year as a way of financially supporting herself while taking a leave of absence from work to refocus on her mental health after being diagnosed with bipolar disorder, obsessive-compulsive personality disorder (OCPD), and post-traumatic stress disorder (PTSD). Check out Jayden’s Instagram page to keep up with her latest fragrances and candles. 5. Brain Fog Designs Why not treat your loved ones to a personalized digital illustration this holiday season? Ray (they/he) of Brain Fog Designs creates colorful custom portraits of people and pets. Their work has a fun, modern vibe, and they kindly offer a sliding scale (at the time of writing this article) for those facing financial hardship. Ray is an autistic, queer wheelchair user, living with attention-deficit/hyperactivity disorder (ADHD) and undiagnosed chronic pain. They started their business this year as they are unable to work, and told me that digital art is something they can do from their bed. Ray’s portraits make a perfect gift any time of the year, especially in the rush of the holidays when the post is delayed due to stress on postal services since they offer printed or digital versions of your commissioned portrait. Follow Ray’s work and keep up with when commissions open on Instagram. 6. Fabulous and Fatigued This Understanding Chronic Illness card is honestly my ultimate greeting card! If, like me, you find the holidays difficult (whether that is due to depression, trauma, or chronic illness), receiving a card like this offers both understanding and validation of our pain. The holidays can be immensely difficult and just knowing your friend “gets it” and doesn’t have any expectations of you can make a world of difference. If you’re reading this and you have a chronically ill friend or relative, trust me: get them this card! Sara (she/her) who lives with fibromyalgia, depression, and anxiety, started her blog, Fabulous and Fatigued, two and a half years ago in order to help raise awareness on how life-limiting chronic illnesses can be. When I asked Sara why she started her business, she said: “Over the years, I have had the realization that there aren’t any greeting cards that speak to the chronic illness experience — not everyone can ‘get well soon’ and a ‘fuck cancer‘ card doesn’t speak to the millions of people with other chronic conditions. In addition, most people struggle to find the right words when talking to a loved one about their illness. Even if they have the best intentions in mind, their words can be hurtful instead of being supportive.” I absolutely love Sara’s mission and I am so thankful to discover a maker who creates honest, meaningful cards that can be shared with disabled and chronically ill loved ones. Check out Sara’s Instagram for chronic illness talk and to follow her creative journey. 7. Unstrung Studios I can’t count the number of times I’ve been told or read that X diet can cure my chronic illnesses. And sure, yoga has its benefits — last year’s lockdown boredom saw me buy the thickest yoga mat I could find because an exercise supposed to reduce pain should not create more pain — but it is not a cure. And after several failed attempts of trying to like kale, I found a way to sneak it into my diet, but hey… I’m still chronically ill! This “Not A Cure” kale pin from Unstrung Studios is the sassy but truthful gift your chronically ill friends will appreciate this year. Megan (she/her) from Unstrung Studios is a disabled artist who specializes in illustrating illnesses using botany and anatomy. Her business started as a way to cope with her diagnosis of POTS, chronic migraine, EDS, and other undiagnosed autoimmune issues. Her work is primarily woodburned, but after experiencing some neurological issues, she has been exploring pen, ink, and color pencil, too. Keep up to date with her work and journey via her Instagram. 8. Candy Doll Club Inspired by the recent rise of “Spicy Autism” memes, this genius pin is the lighthearted gift your autistic friends need this holiday season. Jade (she/her), who lives with autism herself, works as a full-time artist and designer, while also running her own online brand Candy Doll Club, selling pins, accessories, and more, which feature her own designs. She talks openly and regularly on social media about her experiences with autism, ADHD, depression, anxiety, and self-harm. Follow Jade’s Instagram for more of her journey and creations. 9. The PomPomporium Color lovers and fans of the whimsical will be spoiled for choice with The PomPomporium’s selection of joyful homewares and accessories. This Fairytale Pom Pom Mini Wreath would make a beautiful statement door piece or wall hanging. It features Linzi’s signature poms, while also adding a magical twist in the way of bright faux flowers, greenery, and mini toadstools. Linzi (she/her), who lives with functional neurological disease, fibromyalgia, Addison’s disease, and asthma, told me how her life changed dramatically when she was made to medically retire from her beloved job as a full-time English teacher. She described the heartbreak she felt going from teacher to being unable to leave her bed, as teaching was a huge part of her identity. As a form of mindfulness, Linzi began crafting and fell in love with the joy of pom poms, which gave her hand tremors a welcome respite, while also keeping her mind busy. Much like myself, Linzi told me that her health is so unpredictable that being employed simply isn’t feasible and that working for herself allows her to work to her “own wobbly schedule.” Follow her journey and enjoy a behind-the-scenes look at her colorful creations on her Instagram. 10. Juliana Alonso I am in awe of Juliana’s work and, as such, struggled to choose which of her artwork or accessories to feature in this gift guide. Ultimately, I went with “Wondrous Heart” as the delicate calmness of the print speaks to me and echos my own healing journey through trauma. The colors are beautifully whimsical and evoke a sense of hope, and while there is a gentle fragility to the image, it also conveys strength and power — perhaps offering the viewer a mirror in or portal through which to view their resilience. That’s my interpretation, anyway. Juliana (she/her) is an artist and surface designer from Bogotá, Colombia, now living in Houston, Texas. She lives with cerebellar ataxia and has been working as an artist for eight years now. She told me that, with her art, she seeks to create a connection to what matters most in our lives. “Through the last five years in recovery from a neurological event that changed me and my motor abilities forever, I’ve continued pursuing my art business as a way to celebrate life and overcome hardship. I thrive to bring hope and courage so we can dream, grow, and connect with our strength and imagination and to honor our worthiness beyond our ability.” Follow Juliana on Instagram, where she talks openly about her healing journey through creativity. 11. Purl Knitting This soft and cozy knitted Wool Blend Scarf by Purl Knitting would make such a wonderful winter gift for all, but I think it will be especially appreciated by fellow spoonies, many of whom struggle to adapt to these colder seasons. Also, just how beautiful and rich is that red?! Owner and knitter of Purl Knitting, Larissa (she/her), told me that she began knitting in kindergarten and picked it back up again when she became chronically ill in her 20s. She lives with multiple chronic illnesses, including ME, migraine, POTS, and mental illness, including PMDD. Larissa said of her knitting, “I love to knit as it gives me meaning and purpose in my life and is something that’s is accessible to me. I also love knitting things for other people which is why I started my shop, and also to have some extra income for medical expenses!” Check out Larissa’s Instagram for chronic illness talk and to follow her creative journey. 12. Bonnie Does This fairytale Mushroom and Malachite Hair Comb would make such a magical gift for nature and crystal lovers, alike.The creator, Bonnie (she/her), is a disabled artist and disability advocate who lives with multiple disabilities and chronic illnesses, affecting everything from her cognition to her mobility. Like many of the artists I’ve spoken to, Bonnie told me that her art is not just a passion, but a lifeline: “Living with chronic illness and multiple disabilities means I am often unable to get out much, or sometimes even move much. Being able to create with my hands has been such a port in the storm for me. Even laying in bed I can daydream about what I want to create next; my mind is always conjuring up new projects. Even as I was recovering from my most recent brain surgery I was in the hospital bed, planning my next project.” Bonnie also told me that her work helps fund her medical care and schooling. For more from Bonnie, including new projects and advocacy, check out her Instagram. So, there you have it: 12 chronically ill, disabled, and/or neurodivergent business owners to shop with this holiday season. And if that’s not enough, why not check out my gift guide from last year, too? Should you want to, you can also find my own work via my Etsy store and follow my Instagram for acrylic jewelry and more chronic illness-related content, along with my musings on life with mental illness. Are you a small business owner with a chronic illness, mental illness, or disability? Why not share your shop details with us below!

Community Voices

How hard was it for you to get diagnosed/find a doctor familiar with MCAS?

I have hypermobile ehlers-danlos syndrome, POTS, severe unexplained IBS, Barrett's esophagus from GERD, small fiber neuropathy, Hashimoto's disease, Hidradenitis Suppurativa, severe allergies, chronic idiopathic urticaria, and a laundry list of other illnesses. Most of my illnesses all stem from the same evil entity that is hEDS. I am writing on here to ask you how hard it was to find a doctor familiar in MCAS? I struggle greatly finding anyone familiar with it, let alone willing to test for it. Despite having overwhelming evidence that I could have it due to having ehlers-danlos syndrome and already existing severe stomach problems and allergies, it has been impossible for me to find anyone knowledgeable on this condition. It is hard enough for me in a smaller city in the desert to find doctors familiar with my main condition (hEDS) let alone MCAS. What has helped you find out more? What has helped you advocate for yourself and seek answers? I am getting so exhausted of having constant stomach problems, hives, itchiness, swelling, allergies, sickness, etc that is so unpredictable and rampant constantly. Any thoughts or experiences would be greatly appreciated. #MCAS #HEDS #EhlersDanlosSyndrome #MastCellActivationSyndrome #mastcellactivationdisease #EDS #EhlersDanlos #Chronic Idiopathic Urticaria #POTS #HashimotosThyroiditis #hashimotos #barrettsesophagus #IBS #GERD

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Claire G.

What It Feels Like to Be on Long-Term Antibiotics

Being on long-term antibiotics is, of course, not something anyone wants to do. Yet it can also be an absolute necessity for some of us to treat difficult infections. This is my experience of being on long-term antibiotics several times for bladder infections. It is often a difficult time, both in terms of feeling unwell in terms of physical health and from a mental health perspective too. It is hard to take a medication that people have such strong opinions about, even when it is essential for your health. A diagnosis of interstitial cystitis When you live with multiple chronic illness conditions, it can be easy to overlook a symptom (or two, or three even), in my experience at least. The most difficult get all my attention but the less pesky ones get shoved to the back of my mind, with the thought that I should deal with it. But just not today. When things are better. And I have time. And patience. It was this way with bladder symptoms. I knew I was getting pain, a deep lower abdomen pain that was likely my bladder. And I knew I seemed to need to go to the bathroom rather frequently. But I shoved it to the back of my mind as I was in the midst of dealing with POTS, vestibular migraine and a few other diagnosed conditions that were tough enough. Then my cardiologist asked about my bladder and I went along with the referral to a uro-gynecologist. Things moved quite fast, and I was soon having a cystoscopy which showed inflammation and infection, as well as other tests. Prescription: a three-month course of antibiotics My cystoscopy results led to being prescribed a three-month course of antibiotics, cycling between three different types for two weeks each and then repeating it. I was aghast at this treatment plan to begin with. After all, we are told that we should reduce the number of antibiotics we should take and there are implications for our gut health too. Yet it was also the case that the infection needed to be dealt with, not least of which because it was potentially driving, or at least complicating, my mast cell activation syndrome. I took the first tablet with great reluctance. The thought of 90 days of antibiotics seemed like a huge mountain to climb, and I was anxious about side effects. Side effects My first question to the doctor had been the same as I suspect it is for many of us: what are the side effects? I was told potential nausea, upset stomach and headache, amongst others. The first antibiotic I took was a breeze. It was the strongest, but I was fine. In fact, my IBS stomach was as happy as larry on them. I had fewer IBS issues and was almost happy to be taking them. Then I hit a stumbling block. Antibiotic number two made me nauseous. Really nauseous. On day three I was barely able to move off the sofa, and on day four I was sick. A call to the doctor meant a change in the antibiotic, which worked out fine. It felt like a long time Ninety days is a long time, but I know many in the chronic illness community take antibiotics for far longer. It can be years sometimes, to try and get on top of embedded infections for various medical conditions. In comparison, 90 days is just a drop in the ocean. For me, it felt like a long time, mostly because I was worried about gut health but also because of having to time taking the tablets around food. Some you took an hour before, others an hour after. It was all very confusing. Key tip: use the alarm on your phone to remind you to take the pill! And since then… Since that long-term course of antibiotics, I have had to do the same regime again once, and taken antibiotics at other times for shorter periods too. One year, I calculated I had been on antibiotics for more days than not. It isn’t a nice feeling, and brings worry about overall health, but I knew it was absolutely necessary for me. Aside from bladder issues and recurrent infections (UTIs), I also managed to get infected bug bites several times and a skin infection too. It was a worrying time, and I am sure that being on antibiotics was making me more tired, giving me more headache / migraine days and was problematic for my gut. Ignoring the opinions of others One thing that did upset me during my time on long-term antibiotics was being told over and over by people that I shouldn’t be taking them. I mentioned it on my Instagram and had DMs from people I didn’t know (they didn’t follow me, or vice-versa) and who didn’t know why I was taking them that I was being “stupid” and it was bad for my health. Those kinds of comments are always hurtful and make me a bit angry too. It is upsetting to be criticized for trying to manage health conditions, and any form of pill-shaming can make a person feel wrongly guilty or less than for taking prescribed medication. I knew my doctors were being incredibly careful about my antibiotic use and were prescribing them because there was no other choice. It wasn’t done without thought and care. I had to take a deep breath and realize one thing: at that point, it was the best thing for my health to be on the antibiotics. I had infections that were causing harm and there was no other option to treat them.

Rare Disease Patients Deserve Respect From Medical Professionals

Let’s be honest, it’s been a year for everyone all across the globe. The pandemic has tried all of us in ways that we never thought possible. In a strange way it has also united us. Discussions about mental health have brought both conversations and interventions into mainstream life. As we begin to come out of this cocoon and patients with rare diseases and chronic conditions begin to return for routine follow-up care and new referrals, it is becoming more apparent that malevolent interactions in many office settings have yet to catch up to these new mental health norms. The pandemic has taught us that mental health deserves to be recognized on a daily basis and we each have a responsibility in how we interact with one another regardless of station, as human beings with a shared experience. Medical access and mental health have historically intersected for patients. The current global recognition that mental health is a sentry to our well-being requires that we as a community now address the mental health implications that patients experience while accessing medical care. Our time in hibernation has brought forth the unique opportunity for us to emerge with a new healthier construct for patient-physician interactions. As a patient with Ehlers-Danlos syndrome (EDS), mast cell activation syndrome, complex PTSD and a history of cancer I fit into both rare and chronic disease. I have always strived to accept I have a disease yet not let that disease define me. This practice has strengthened my mental resolve and served to help me weather many a storm. That mental resolve quickly dissolves, however, when physicians approach office visits as an opportunity to dress me down. It happens fast and without notice so a person can be left to feel they have just experienced some type of assault. It is a trigger that historically has been repeated for far too long. I understand that my patient responsibility extends beyond my HIPPA form, office policy and payment schedule. I prepare. I make copies of medication lists and surgeries to expedite time spent on those items. I write out one to three specific questions to target and keep conversations on track. I understand that my physician is not my therapist. I have accepted that secondary to my rare and chronic situation a particular physician I am being referred to my not be familiar with or agree with my diagnosis. I am prepared. What I have not been prepared for is open mockery, laughing, rapid fire questions and being cut off mid-sentence. This unfortunately has been my experience along with many other chronic and rare disease individuals. The manner in which medical professionals approach patients directly impacts those same patients’ mental health, whether they are formally diagnosed with a condition or not. Medical professionals have a responsibility in this partnership as well. That sounds like a bold statement, but it is actually an invitation. We now know better and as a global community must work together to do better. Do No Harm does not just apply to procedures, surgeries and prescriptions. The mental health of patients is not just reserved for collogues who specialize in that field. The Duty of Care by physicians extends to their verbal interaction with patients. The ethical principal of the Art of Medicine implores us to recognize the importance of mental health in conversations being held in offices around the world. In light of our new global awareness surrounding mental health in our daily lives, it is essential that we now literally change the conversations taking place in medical offices on a daily basis across the globe. If the pandemic has taught us anything, it is that we need to bring forward a new mentally healthier patient-physician construct.

Surgery Saved My Life, But I Still Live With Chronic Illness

In the life of someone with Ehlers-Danlos syndrome (EDS), it’s rare to ever just have one specific treatment or surgery. In my case I actually had multiple surgeries before learning about my EDS diagnosis or what was causing my debilitating abdominal/pelvic pain and digestive issues. Once I learned about the multiple vascular compressions and that they are also linked to my EDS, I knew I was more at risk, especially with organ damage or failure if I didn’t address them with surgery. Unfortunately since MALS (median arcuate ligament syndrome), SMAS (superior mesenteric artery syndrome), NCS (nutcracker compression syndrome), MTS (may-thurner syndrome) and PCS (pelvic congestion syndrome) are even more rare than EDS, finding a surgery or surgeon was another journey in itself. When I continued losing weight from not being able to eat and drink without pain, became bedridden because of my abdominal/pelvic pain, and then started vomiting and having constant kidney stones, I knew we were desperate and had to do something soon. That something was traveling to Germany during COVID to specialists who understand these conditions and the connection to EDS. With the help of crowdfunding for the cost of the trip and surgery (since there was no way insurance would cover without being in the US), not only did I make it there and get answers and diagnoses that took over 20 years to get, but I had surgery at just the right time. My duodenum had actually stopped functioning, I was having trouble urinating and my left kidney was dropping and getting zero blood flow when I would stand because my renal vein and superior mesenteric artery were completely pancaked. It’s been a long and slow recovery, but I’m now about to hit my surgervisery milestone. I’m not just able to eat and drink again, I don’t have the severe and unbearable abdominal/pelvic pain or symptoms that I accepted would be my reality for the rest of my life. Being able to do things like playing with my two young daughters and helping my husband clean the house or fix meals, I’m so incredibly grateful for. But at the same time, others who aren’t familiar with EDS have a hard time understanding that although I had a surgery that saved my life, it wasn’t a surgery that would cure me of chronic illness or pain. EDS affects each individual differently, but those of us that have it, all know connective tissue is in everything throughout your body. I’ve gone to war and won one battle, but it doesn’t mean I don’t have others currently like POTS (postural orthostatic tachycardia syndrome) or MCAS (mast cell activation syndrome), or that I won’t continue having others arise. The difference now is I know the enemy I’m up against. I have confidence in myself that I continued fighting despite disbelief and misdiagnoses for years. I’ve met some wonderful and knowledgeable doctors that are now on my team, so I’m not alone. And most importantly I’m creating awareness, change and a path for my daughters who are starting to go through this journey. I know family and friends may be confused that my surgery was successful when I still need a cane or wheelchair some days, still have to cancel plans last minute or can’t attend a social gathering, still have food intolerances and still talk about my health. Unfortunately EDS is here to stay, but it just gives me the opportunity to share with everyone I know or come across what I and others are experiencing. I’ve learned to adapt and be proactive with my health. I can no longer pretend I’m a “normal,” functioning human being because it was doing me an injustice and also an injustice to everyone who lives with this disease. It’s OK to rest, it’s OK to save up my spoons, it’s OK to admit there are days I will have to stay in bed all day, it’s OK to take care of my body. But the difference is I celebrate every day I’m still here, celebrate that I have answers and proof of my symptoms and pain, celebrate everything I can do and each moment I get to be a part of, and celebrate that we can still have hope and live despite those obstacles.

Community Voices

After many years of being misunderstood and misdiagnosed this girl recieved her second accurate diagnosis 🥳 I never heard of #Vulvodynia before. Now i have a name for this locolised chronic pain !

I previously got diagnosed with #MastCellActivationSyndrome

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Sarah Houghton

When Mornings Are Tough With Chronic Illness

Like many people with chronic health issues, I have difficulty explaining to generally healthy adults what it’s like to live with multiple complex chronic illnesses. I have Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, dysautonomia, mast cell activation syndrome and several other disorders because why not. Each one of these disorders or syndromes needs to be explained separately as each manifests differently. I have both a one sentence and a one paragraph description for each that I pull out when I see a new doctor, make a new good friend and decide “it’s time for the talk,” or have to explain this part of my life to some random person who’s seeing me be sick and not understanding what’s happening. But those short descriptions are not enough. They don’t capture what living my life is like. So I’m going to explain what my mornings are like. Just the mornings. Trust me; it will be enough. You’ll understand. 7 a.m.: I wake up ideally at 7 a.m. if I haven’t had a histamine dump at 4 a.m. (which I occasionally do, and in which case I’m up at 4 baby!). I almost always wake up on time…usually in the middle of some unpleasant dream or other (thanks anxiety). My first task is to breathe and to consciously tell myself that the dream world I just left isn’t real, I haven’t just lost an arm in a fight with a post-apocalyptic over-sized eel monster, and I’m safe in bed. Putting the dream world aside, every morning I wake up feeling awful and not rested. Have you ever woken up with a seriously bad hangover? An “Oh I regret every moment of last night” hangover? It’s very close to that. Everything hurts, your head is pounding, stomach rolling, the light hurts your eyes and you want to roll over and be unconscious again. That is my “every morning.” 7:05 a.m.: I do a physical assessment. What hurts? I start to move around a little bit—and I do mean a little bit. With Ehlers-Danlos syndrome (I have the hypermobility subtype) I am prone to joint subluxations and dislocations. So my first order of business body-wise is to assess if anything has popped out in my sleep. The answer is usually yes and usually ribs or vertebrae. The next order of business is to gently stretch and move to pop those things back in. So for about 15 minutes I’m wiggling around on the bed like a slow motion snake trying to put my skeleton back together. Grunts and curse words inevitably spill out of my mouth. 7:20 a.m.: Once all the bits are put back together as well as they can be I slowly sit up in bed, though not too fast or I will trigger my POTS and I’ll faint. Then I stand (also not too fast). Off to stumble to the bathroom for my morning ablutions and an unpleasant poop. All pooping is unpleasant for me thanks to my mast cell activation syndrome and/or irritable bowel syndrome and/or Ehlers-Danlos syndrome. Who knows? That’s part of living with these disorders. I never know for sure what caused a symptom. I wash my hands and face, brush my teeth and then I grab my pre-organized medications for the day and get a glass of water from the kitchen. I take the 12 prescription medications I have been told to take first thing in the morning. 7:35 a.m.: At this point I feel even crappier than I did when I first woke up. My POTS is making me dizzy and short of breath so I lay back down in bed, waiting for the medications to do their jobs and transmogrify me into some semblance of a human being. Most mornings I also wake up having a mast cell reaction—usually with facial and chest flushing along with tachycardia…or maybe I’m spasmodically coughing for no good reason. I could be reacting to something I ate the day before and have an inexplicable rash on my arms.  I could be reacting to the pollen in the air and my legs feel like they’re covered in mosquito bites. Most mornings I also wake up with some symptoms of dysautonomia: blurred vision, tremors, muscle weakness, just roll the dice and pick one.  I also typically have some type of neuropathy (nerve pain) going on in my hands, feet, jaw or neck, so that adds an extra challenge. All told I generally stay in bed about an hour letting these things fade as much as they’re going to for the day as coherent consciousness sets in and the medications begin to work. I’ll continue stretching and moving my body, check my phone for urgent work issues and play a word game to distract myself while my body sorts itself out a bit more. 8:35 a.m.: It’s go time. No matter how I feel, it’s time to get up. I get dressed, talk with and hug my husband, give the cats some pats and move into my home office to start my work day. I am lucky enough to work full time from home, so my commute is a mere 15 steps. No breakfast? Nah. I can’t eat before 10 a.m. without throwing up. No shower? No way. Showering is, despite my mere five minutes in the shower, an hour-long procedure that results in me nearly fainting every time. Showering happens during the day or at night when I have buffer time. No morning meditation? Ha. Try meditating when your body feels like it’s actively failing in a dozen different ways. No morning exercise? That’s hilarious. No making the bed? No. Because the second I’m off of my Zoom calls, I’m back in bed because that’s the most comfortable place for me to work. That’s me. That’s my morning. No matter what time of day you see me, I have dealt with at least that much (gestures vaguely at the above paragraphs) so far. To be fair, the rest of the day is less awful, slowly. Unless, that is, I have to sit in a chair for more than an hour at a time. Or if I have another mast cell reaction. Or random joint dislocations. Or stabbing nerve pain in my…I don’t know, pick a body part. I deal with all of that all day, often on camera, without people seeing it or noticing it. Have you ever dislocated, then relocated your wrist in the middle of a meeting? I have! A bunch of times! If there’s one thing those of us with chronic conditions do well, it’s to hide our symptoms from others. When you feel awful all day, you learn there is no point in telling people around you how awful you feel. It’s not helpful to us or to you. If you start your day without having to do the above things, or similar routines specific to your chronic illness, and your days are relatively pain and physical and mental struggle-free, then you live with incredible privilege. Please acknowledge that, both to yourself and to others. Truly hearing and taking on board the experience of others is the first step to empathy. I hope the story of my mornings can build some empathy, not for me, but for all people with chronic health issues whose “invisible sick lives” go unobserved, unnoticed and unappreciated. We do so much more just to get to the starting line of the day. We take two steps for every one step you take. We fall down while you stride forward. We don’t talk about it. We deal with it. This is the hand we were dealt. If you take nothing else away from reading this piece, let it be this: Every one of us has a different daily experience. Be loving. Be supportive. Believe people who have chronic and complex conditions of any kind. Above all else, be kind. You can never know someone else’s life, but you can demonstrate that all important empathy.