Autumn Aurelia

@autumnaurelia | contributor
Queer, chronically ill maker and occasional writer. I live with endometriosis, fibromyalgia, C-PTSD, OCD, and major depressive disorder.
Community Voices

Going for an EDS Diagnosis

Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.

This post will probably be pretty long, so I apologise in advance for that.

So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.

I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).

I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.

I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.

So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:

Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.

Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!

Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.

Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.

Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.

Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.

Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.

Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.

Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.

Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.

Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.

I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.

Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness

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10 Cliché-Free Gifts for People Who Hate Gift Guides

The holidays are upon us again, and ’tis the season for spending a fortune on presents you can’t afford for people you may or may not like. And with this yearly tradition comes the inevitable deluge of gift guides — recommendations from strangers that usually consist of the same banal assortment of items. Here at The Mighty, we do have some excellent shopping guides for people with health conditions — but I could roast a lot of chestnuts on a bonfire fueled by all the fuzzy socks and candles on our lists. Is that the best we can do, or ask from our loved ones? It’s time to get a LOT more honest and change the conversation around what actually makes a meaningful gift for someone with a mental illness, chronic illness, or disability — or anyone for that matter. Here are 10 unique, hilarious, empowering, and/or slightly dark alternative gifts you can give a friend or family member — or that you can buy for yourself because you know you’re gonna get the same old boring crap from your family again this year. 1. Something Original to Brighten Their Home If your loved one with a health condition recently moved, or if they stay at home a lot, or if they just haven’t been able to do much decorating, then chances are they’re probably tired of staring at the “Agreeable Gray” walls in their apartment or house. Seriously, why is gray a home decorating trend? Talk about dull and depressing! I’d rather see ’70s avocado green and UTI yellow back in style. The point is, if you want to brighten their day, you could buy them a Live, Laugh, Love sign made by a 12-year-old in a sweatshop… or you could have something made for them by an actual artist. There are many talented crafters on Etsy just waiting for you to stop funding Jeff Bezos’ next trip to space and help them pay their rent and student loans. Here are a few to check out: Song lyrics and poetry handpainted on wood, or get a custom quote — by Folk Art for Loners   Venus on Wheels by French Painstry Chef   2. Something Empowering Mawkish messages. Pity-filled platitudes. Enough with the inspiration porn already. Many people with a disability or chronic illness hate pity. We don’t want people to feel sorry for us, we want respect and support and allies to join us in the fight for better healthcare and support services. So instead of generic affirmations, choose something that affirms us as full human beings with rights. Accessibility Is Never Optional Sweatshirt from Grace and Brace, a chronically ill designer with lots of empowering and humorous shirts available   Neurodiversity necklaces and autism communication necklaces from Space Robot Studio, an autistic-owned business   All Bodies Are Good Bodies T-shirt from Sonnet and Sloth Studio — check out all their mental health, chronic illness, and disability-themed gifts   Be Your Own Light Pin from Kurious Katie Designs — check out all their uplifting mental health gifts   Doodle People has dozens of brutally honest advocacy pins for people with any kind of health condition you can imagine — far too many to show here!   3. Something to Make Your Home Accessible and Welcoming When I was a kid, we would visit my grandparents and my uncle’s family on holidays. Neither had wheelchair-accessible homes, so getting me inside involved either my dad throwing me over his shoulder like a sack of potatoes or a makeshift plywood ramp so steep it would terrify Evil Knievel. As a little kid, I felt bad about how hard it all was and blamed myself, but now I wonder, why didn’t they invest in real ramps or make one of the entrances to their homes wheelchair accessible? Both families were well off, so money wasn’t the reason. As an adult, I came to realize that accessibility just isn’t a priority for most people, even family and those who say they love you. They either don’t know or don’t care how much it hurts to feel like an inconvenience or an afterthought at family gatherings. But if you have a loved one with a health condition, you have the power to make a different choice. You can show how much they mean to you by asking them how you can make your home more welcoming to them. Maybe it’s getting a real ramp for your front door that has two steps, and putting up a safety rail in the bathroom. Maybe they need a meal that doesn’t contain their allergens, or a sensory-friendly environment. And if accessibility isn’t feasible because you live on a cliff in the mountains or a sixth-floor NYC walkup, you can offer to have your holiday gathering in a hotel meeting room or a local restaurant that’s accessible to everyone. The gift of inclusion — it’s priceless, people. Buy a 6-foot wheelchair ramp.   Buy a gluten-free holiday cookbook.   4. Something Basic From Somebody Who Isn’t We all have this person on our holiday gift list — probably a few of them, especially if you’re white and live in the Midwest USA. They have the most boring taste, and shopping for them requires a Venti Starbucks pumpkin spice latte (their favorite) because you’d fall asleep otherwise. So what’s the alternative to doom-scrolling through a hundred “family isn’t everything — it’s the only thing” coffee mugs for that uncle you only see once a year because his Facebook is full of conspiracy memes about lizard people secretly running the government? My solution is to change where you’re shopping, even if you can’t change what you’re buying. I may be shopping for a basic Midwest grandma who likes basic Midwest grandma things, but I can do it at my local fair trade store (and so can you, they have a website). You can also visit local handmade markets and Etsy to find simple yet beautiful items made by artisans instead of mass-market junk. Gemstone and upcycled jewelry from Cinnamon & Silver, owned by a disabled cancer patient and Mighty community member   Custom Tumbler from Team Valor, a disabled veteran-owned business   5. Something Unique to Fidget With Fidget spinners are loud and can be visually distracting to other neurodivergent people if you’re trying to stim in public — which is often necessary thanks to the sensory chaos that is the 2020s. Now we have lots of better choices, such as quiet crocheted fidgets made by an autistic person. And with 3D printers going mainstream, new fidgets are being created all the time. Here are a few you or your neurodiverse child or adult might want to try. Handmade marble maze silent fidget — from Fabulous Fidgets, an autistic-owned business. Button crochet stim toy — from SoftStims, an autistic-owned business 3D-Printed Fidget Dragon from Make It Michael   6. Something Honestly Huggable Teddy bears are so 1902. Why not get a gift that represents their health journey instead? Like this plush gall bladder, which I bought for my friend when she needed to have hers removed, only to have it stolen by a porch pirate. Imagine being that thief, tearing open your latest haul hoping for an iPad, only to find… a stuffed gall bladder! Luckily, Amazon sent her a new one, and as a side benefit, the hilarious saga delayed Jeff’s next trip to space by .0002 seconds. Thanks, porch pirate. Buy a huggable gall bladder. You can also get a kidney, heart, and even a cuddly COVID-19 vaccine to troll that anti-vaxxer on your shopping list. If huggable body parts aren’t appealing, how about a Feisty Pet stuffed animal to let people know when it’s Not A Good Day. Or this honey badger for your favorite badass who doesn’t give a s*** and keeps fighting no matter what life throws at them.   7. Something Funny But Not Mean Again, if generic inspirational stuff is not for you or your loved one, there are plenty of gifts that tell it like it is. But if you don’t know how sensitive your loved one is to jokes about their health, be sure to buy something that isn’t too self-deprecating or potentially offensive. I am not easily offended (and would have made this anti-gift guide even more dark and snarky if it was just for people like me) but some folks in our community may not draw the same lines I do. I want to respect that, and you should too when it comes to the people in your life. But these items may be perfect for someone with a sense of humor about their health. Anxiety Is High Today Sticker (also available on mugs, t-shirts, and sweatshirts) from Fugly Barbie   Too Low on Spoons to Give a Fork T-shirt from Sunshine Garments   Actually, I’m Faking Being Well T-shirt from Sonnet and Sloth Studio — they have tons of other hilarious and snarky mental health, chronic illness, and disability-themed items to choose from as well!   Insufficient Funds Magnet from My Vintage Life   I Could Take Over the World Sticker from Watercolor & Sarcasm — don’t miss their other funny ADHD and neurodiversity stickers!   8. Something Made By Somebody With a Health Condition (and More Talent Than You) Working when you have a mental health condition, chronic illness, and/or disability is hard. Many employers assume we would be bad for the bottom line and don’t even give us a chance. Traditional work hours are often difficult for people with chronic illnesses because they have good days and bad days. Maybe you’ve heard of the spoon theory or bones days/no bones days — they both explain it pretty well. Anyway, because society is ableist and designed employment around unreasonable assumptions about human ability (not to mention capitalistic greed) many people with health conditions can’t work at traditional jobs, so they start small businesses instead. There are thousands of people with serious health conditions who are amazingly talented at art, crafting, sewing, music, etc. Buy stuff from them. Robin Finn is a disabled trans illustrator who creates beautiful disability-positive, cottagecore, and fantasy-themed art.   Autumn Aurelia is a disabled creator of colorful acrylic jewelry and wall art.   Jessica Jewett is an artist who paints with her mouth. Her motto is, “Live fabulously with a wheelchair and a pencil.”   9. Something That’s Actually Useful If you are going to visit one of the vortexes of corporate evil to do some shopping for your loved one with a health condition, at least buy something they can actually use. Many people with chronic illnesses and disabilities find cooking difficult and exhausting, so popular kitchen gadgets can be especially helpful for them. Most people just bought instant pots and air fryers because they’re trendy, but you could really make a difference in someone’s life by giving one of these gifts. Buy an Instant Pot/air fryer combo.   Cleaning is also a huge hassle when you’re chronically ill. A robot vacuum makes life easier and is cheaper than a cleaning service in the long run. I’d also like to take this opportunity to formally request that Boston Dynamics teach their Spot robo-dog to clean instead of creepily dance to classic rock songs, and send one for free to every disabled person in the USA. You know they can afford it. Sure, we’ll be the first to be destroyed when Skynet comes online, but in the meantime, my house will be dust-free! Buy a robotic vacuum.   If your budget doesn’t extend to air fryers and robot vacuums, those cheesy “as seen on TV” gadgets you probably made fun of while trying to fall asleep at 3 a.m. are actually very useful for folks with arthritis, cerebral palsy, and other disabilities that affect the hands. Buy a Cup Cozy drink holder.   10. Money… Do I Need to Explain This One? Living with a chronic health condition is expensive. Even if you have insurance in the USA, many treatments aren’t covered, such as hearing aids, and many prescriptions are prohibitively pricey. It’s time to stop ignoring this reality when we talk about gift giving. Sure, Aunt Mary has to turn her TV up so loud it annoys the neighbors, only has an expired Epi-Pen for her nut allergy, and is rationing her $600/month insulin, but that World’s Best Auntie music box and 12-pack of Reese’s cups will make the perfect present! A quick but important note here — if your loved one receives SSI (disability benefits for low-income people with little or no work history), they are trapped in an evil system that will deduct from their benefits if they are known to receive more than $25/month in “unearned income” — while billionaires pay next to no taxes. So it’s best to just buy a relative on SSI what they need directly, and definitely don’t write them a check or deposit money in their bank account. If they have an ABLE account or special needs trust, you can gift money there and they can use it for medical expenses. I hope this list has helped you think outside the gift box when it comes to holiday shopping — and maybe skip the fuzzy socks to give a present that actually matters this year.

Autumn Aurelia

Sexual Desires Disgust Me After Childhood Sexual Abuse

For as long as I can remember, I have always felt disgusted by the idea of sex. While my teenage friends embarked on a journey to discover their sexuality, I forced myself to live in a “pure world” — a world without sex or sexual desires. I call this a “pure world” because to me, sex — as I have known it — has always been an act of violence and control. As such, my experience of it has been the very opposite of pure. My first encounter with “sex,” not that it should be called that, was a dark one. I don’t know at what age it began, but my earliest sexual memories are from around 7 years old. My abuser was an older family member who was entrusted with my care. It went on for years. He used my body like a piece of meat, casting aside his humanity in favor of his own sick sexual desires. It finally stopped when my mother ended her marriage to my father, due to a completely separate kind of abuse. The next few years were spent in (what I now know to be) a repressed memory state. Far away from both my father and my abuser, I was finally free to experience life as a semi-happy child and while those years were beautiful, they are also tainted by my denial. What came next changed me forever. It happened in a sexual education class. I was 14. I can’t recall the details or the moments that led up to it, but I do remember the laughter — how the boys cheered and the girls blushed. I remember feeling outside of my body as if I were watching myself from afar. I remember running. I remember hallways that would follow me in nightmares for years to come. I recall questions, lots of questions, and then days of confusion — days that wove into weeks that melded into months and finally into years of ongoing flashbacks, dissociation and anxiety. While everyone around me was experiencing their first kiss and eventually their first sexual encounter, I was creating what I perceived to be this “pure world” — a world free from sex or sexual desire. If a friend tried to talk to me about sex, my reaction would be to either dissociate or laugh. Both were involuntary. Neither were welcomed. This was a phase I expected to outgrow, yet somehow it followed me everywhere I went — from school to college, college to university, from meaningless romances to the serious relationship I find myself in today. Simply put, sex = repulsion. Sex = bad. Sex = shame. To combat this repulsion and fear of sex, I threw myself into several relationships; I really don’t recommend doing this. It was my hope I would find someone who made me see sex as something positive, desired even. Here’s where it got confusing. I began to notice I did enjoy intimacy, or rather I craved the idea of it, but I was so haunted by this deep shame I felt whenever I gave in to these desires. Throughout the years, I toyed with the idea I might be gay because my repulsion seemed to be more directed towards men. I discovered I was absolutely fine with being gay; in fact, I would even say I was happy about it because it finally gave me the answers I needed. I tried to date women and for the most part, it felt good because they were able to provide me with a kind of safety I had never before experienced. I now understand this safety to be related to the trauma I experienced at the hands of men. With women, there was no threat of violence. I felt pure when I was with a woman, but as things progressed and sexual desires were discussed, I realized that no matter who I was with, I still felt disgusted and ashamed by my sexual desires. What I didn’t realize throughout this entire battle was that I had been avoiding the one thing that likely caused my disgust: the abuse. The abuse changed me. What I experienced as a child changed me. I had no idea what was happening to me, and as such, I now feel contaminated by him and what he did to me. When I think of sex, I have no other association with it other than how my childhood abuser used it to control me. It makes me feel dirty, tainted, impure. It is no wonder, therefore, that I created such a “pure world” for myself in which sex didn’t or couldn’t exist. Years on, I have finally found the person I want to spend the rest of my life with, but the simple act of being in a relationship with him interferes with my unrealistic ideal of living in that “pure world.” As such, I am consistently torn between my own desires and my disgust surrounding sex — between my terrified inner child and my adult self, the one who craves intimacy. In my sound mind, I know that having sexual desires is nothing to be ashamed of, but when it comes down to it, I just cannot separate myself from my abuser. I try to remind myself that abuse is an act of violence, not love. Abuse isn’t about desire but is instead about force and manipulation. My own desires couldn’t be any further in the opposite direction from those of my abuser, but still… the simple notion that I have any kind of sexual desire is always linked to my abuser. It comes back down to that simple equation: sex = bad. So any time my partner and I attempt to be intimate together, I shut down both mentally and physically. My body locks and my muscles tighten — a symptom of vaginismus. Rationally, I know I am no longer that child who was abused, but my body still holds onto the trauma and my mind still associates sex with sexual abuse. In moments of sexual desire, I find myself asking: If I’m sexual now, does it mean I wanted the abuse to happen? Am I allowed to have these desires? Do these desires make me and my abuser alike? There are rare times when I’m able to switch off the thoughts, when I’ve given into my desires, but this brings with it a new challenge. How do you accept your sexual desires when you are so repulsed by them? For our first few years together, my partner had absolutely no idea of the breakdowns I experienced in the bathroom after we were intimate — crying, shaking, nausea and regretful shame. To him, we shared something beautiful — something pure. I rationally understand it’s perfectly natural to want to be intimate with your partner, but my mind tells me I’ve just partaken in something dirty — something vulgar. The problem is, I’m still trying to protect that little girl who was abused and by allowing my adult self to be intimate with my partner, I feel like I’m corrupting her all over again. This time, I feel like I’m my inner child’s abuser. Nowadays, I’m trying to be more open with my partner. I’m trying to experience pleasure without guilt by talking about it every step of the way, but it isn’t easy. My inner child calls out to me often. She’s terrified of being hurt again and I am so scared of hurting her. The best thing I can try to do for her right now is to listen to what she has to say and try to learn from it. If we work together, perhaps we will be able to heal and relinquish his control over us both.

Community Voices
Community Voices
Community Voices
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
Autumn Aurelia

Gift Guide for Supporting Disabled Business Owners and Artists

We’ve all heard the slogans “shop small” and “shop local,” but it occurred to me recently that we rarely encourage people to support disabled makers and business owners, so that’s exactly what I hope this gift guide encourages people to do. My own journey as a maker of acrylic jewelry began a little over a year ago. I had been out of work and unable to leave my house for around eight years due to my ongoing battle with complex-post traumatic stress disorder , obsessive-compulsive disorder ( OCD ) and major depressive disorder . Slowly, my mental health began to improve, but my physical health declined quite rapidly as I tried to leave the house more often and I was eventually diagnosed with ME/ CFS and fibromyalgia , alongside my already-existing endometriosis diagnosis. It was both frustrating and heartbreaking to me that all of my efforts to heal so I could finally leave the house again and find employment should come crashing down in front of me before I even had the chance to enjoy my new-found freedom. So, as I tried to adjust to this new life of chronic physical illness, I decided that I would seek work from home opportunities. Now, bear in mind this was pre-pandemic times and if there’s one thing I’ve had confirmed for me during this past year, it’s that disabled people are constantly erased from society. So, when I tried to find positions working from home, I was consistently told that it wasn’t possible to carry out the tasks required outside of the office. Skip forward a year and it seems like the entire world is ready to make the necessary adjustments so that staff are able to work from home. Frustrated once again that my efforts to find work were futile, I decided to spend time learning a new skill: jewelry design. From there, I opened up my first ever Etsy store and the rest is history. I can say, without a doubt it was the best decision I ever made. Working for myself has its problems (it’s intense!) but the benefits of being able to decide when I work and when I need to rest is something I will never take for granted. If I’m having a particularly difficult day with fatigue, my bed is just seconds away from my work, so I’m able to rest up for the day. When I’m experiencing an intense flare-up of chronic pain, same thing. Of course, it’s not all positives though and I know, firsthand, how much harder my fellow disabled makers have to work to keep their businesses up and running, while also managing their health and self-care. We are some of the most hardworking, dedicated and passionate individuals and so you bet I jumped at the opportunity to create a gift guide to shout out about how awesome this community is. So, by all means, shop small this holiday season, but shop disabled, too, because I promise you this carefully-curated list of chronically-ill/disabled makers will blow you away. 1. Dainty Beaded Ring by My Molly Elizabeth This dainty beaded ring  ($20+) by My Molly Elizabeth is the absolute perfect gift for the minimal jewelry lover in your life. It’s available in either Sterling Silver or 14k Gold and is made stretchy for comfort — making it an easier wear for many Spoonies, I’m sure. The maker, Molly, is such an inspiration to me. At just 23 years old, they are already making such beautiful and meaningful creations. Molly told me that over the past few years they’ve grown tremendously with their shop. Molly lives with dysautonomia  and  postural orthostatic tachycardia syndrome ( POTS ) and told me that their creativity has always been a safe haven and distraction from the anxieties that come with having an illness. For more of Molly’s work, be sure to check out their Instagram . 2. My Wheelchair Is My Freedom Hoodie by Colourblind Zebra This ‘My Wheelchair is my Freedom’ hoodie (£29.00) by illustrator Colourblind Zebra was an absolute must for the gift guide! The idea that wheelchair users are “bound” to their chairs is both archaic and stigmatizing. As the maker says, “Our wheelchairs are what allow us to get around the world, they are not prisons that we are confined to! This shirt is the perfect reminder to others that our chairs are not a hindrance to our lives, but instead, they’re a massive aid in helping us live it!” These are also available as t-shirts and sweatshirts, too. Colourblind Zebra told me that they have lived with chronic illness since the age of 11, which meant they had to leave school early, and that their creativity is what helps them through tough times. For more of Colourblind Zebra’s work, be sure to check out their Instagram . 3. Brain Frog Pin by Innabox Let me start by saying, I love puns, so this was a no-brainer. This illustrated Brain Frog pin (£7.00) is a must for those living with chronic illness ! It’s cute and quirky, while also raising awareness for chronic conditions. The pin arrives on a card backing and is wrapped in tissue paper to ensure a safe journey overseas. The owner, creator and maker of Innabox, Nikky, told me that they started their business back in 2012 after years of struggling in retail. They live with IBS and severe endometriosis . For more of Innabox’s work, be sure to check out their Instagram . 4. ME/ CFS Awareness Shirt by Spoonie Sister Shop I’m in love with this ME/CFS Awareness Shirt ($25.00) and not only because it promises to be ultra-soft and comfy (perfect for those of us living with sensory sensitivities), but also because it comes in over 20 different colors! The range available from Spoonie Sister Shop is honestly incredible! Fellow spoonie sister, Michelle, told me that they started their business to help raise awareness for all chronic illnesses (no matter how rare) through cute awareness apparel, gifts and accessories. Michelle was diagnosed with median arcuate ligament syndrome ( MALS ) and renal nutcracker syndrome among others. For more of Spoonie Sister Shop’s work, be sure to check out their Instagram . 5. Let Yourself Rest Illustration by Ananya Paints I think this print ($4.85+) makes an absolutely perfect self-care gift, whether you are disabled or not. It would be ideal to hang above a bed or sofa, gently reminding the person that they have no need to feel guilty about taking time for themselves. After all, rest is also productive. Ananya is an illustrator and chronic illness activist living with MS and post-concussion syndrome . They told me that they opened their Etsy store last year after having to take time off due to being sick. For more of Ananya’s work, be sure to check out their Instagram . 6. Endometriosis Warrior Art Print by Abi Stevens I’m a big fan of this colorful Endometriosis Print ($4.15+), available in either A5 or A6. Abi’s work is super diverse, covering a wide range of illnesses, in a variety of prints, stickers and pins. Abi lives with chronic migraines, ADHD  and suspected endometriosis . They told me that they left their job last year due to their health and now works as a freelance artist, specializing in commissions, prints, jewelry and more. For more of Abi’s work, be sure to check out their Instagram . 7. Sleep Kit by Spoonie Box I couldn’t create a gift guide without including something from Spoonie Box. This Sleep Kit (£39.50) is such a dream (I told you I love puns!) gift. I won’t spoil the contents of the box, but all the details are on the website should you want to know. I will say, however, that this box is extremely good value for the cost and it also comes with a sleep pamphlet, which contains lots of helpful tips on how to best use the products. Honestly, I think I might have to treat myself to one! Owner and creator of Spoonie Box, Kristina, told me that they created their business to help those with chronic illnesses feel connected to a community with a monthly subscription of products selected solely with their needs in mind. For more from Spoonie Box, be sure to check out their Instagram . 8. Bright Rainbow Striped Cardigan by VelvetVolcano I had a really difficult time choosing which of VelvetVolcano’s colorful creations to choose for the gift guide, but ultimately, it had to be the Bright Rainbow Striped Cardigan (£98.50). Can I just say… it has POCKETS! And if that’s not awesome enough, Velvet Volcano offers this beauty in a range of sizes, going right up to a UK size 28-30 — this fat girl thanks you! Oh, and if rainbow isn’t your thing, you can actually choose from 35 yarn colors to make your own custom cardi. Oh, dear… I have a feeling I’m going to be ordering one of these, too. So much for gifting others! What I love about VelvetVolcano is that it’s entirely family-run. Tamsyn, who lives with mast cell activation syndrome , erythromelalgia , browns syndrome, hypermobility spectrum disorder and autonomic dysfunction , has been running the business with their mum (and carer) for the past 11 years. You can learn more about VelvetVolcano over on their Instagram . 9. Fallen Leaves Set by The Loopy Spoonie I’m called Autumn and I’m obsessed with autumnal colors, so you betcha I included The Loopy Spoonies’ luscious Fallen Leaves Set ($22.00+), which are double knitted for extra warmth. If, like me, you or the one you’re buying for struggles with the colder weather, causing pain and discomfort, this would be such a welcomed gift, I’m sure. The Loopy Spoonie is an ambulatory wheelchair user with both mental and physical illnesses. They have received multiple diagnoses over the past five years, though they told me that they are still nowhere near the end of their diagnostic journey, which is something I’m sure a lot of us spoonies can relate to. What I loved about The Loopy Spoonie’s story is that their passion for knitting actually developed from a lengthy hospital stay when a nurse kindly taught them how to knit. They told me they haven’t really been able to stop since. It’s such a lovely reminder that light can be found even in the darkest of times. For more of The Loopy Spoonie’s work, be sure to check out their Instagram . 10. The Coven Button Set by Laura Makes Things I’m quite obsessed by anything celestial and witchy, so when you find something that’s made by a spoonie, related to life as a spoonie and has witchy vibes — yeah, I’m all in! This Chronic Coven Button Set ($10.00) is such a cute gift set and ideal for fellow witches. What’s more though is that the buttons aren’t just a product, but an invitation almost to join The Chronic Coven, which is an Instagram community created by Laura for those fighting chronic battles or for anyone who needs a little magic in their lives. So, by gifting this set you’ll also be offering the person an opportunity to connect with like-minded people so they don’t have to battle alone. Laura Babiuk is a chronically ill/disabled artist and small business owner, specializing in hand-embroidered goods and hand-sewn clothing, as well as digital arts, pins and lots of other magical things. Laura told me that art has been their main way to process and cope with their illness. They have adapted their craft to fit the fluctuating needs of their body (embroidering in bed when they can’t sit at their desk, etc) and their nurses have often seen them fulfilling orders in the hospital during their stays — that’s what I was talking about earlier when I mentioned dedication! Follow more of Laura’s journey over on their Instagram . 11. Iced Gingerbread Heart Necklace by Peculiar Thing This adorable laser cut, acrylic Iced Gingerbread Heart Necklace (£44.00) is such a sweet (I didn’t even plan that one) gift. Whether it’s for a quirky, cookie-obsessed friend or someone who simply loves baking, I’m certain this gift will be loved! Liw creates a range of colorful, handcrafted jewelry, and started their business as a way to be able to work around their illnesses ( Ehlers-Danlos syndrome , depression , anxiety and CPTSD). You can keep up with Liw’s creations over on Instagram . 12. Personalized Santas Workshop Labels by CraftSchmooze I’ve long been obsessed with stationery, but ever since creating my own business, I now have the perfect excuse to shop for all the fun things that are sent alongside my orders: thank you cards, fragile stickers, cute little thank you stickers to the Postie (I mean, the mail doesn’t arrive without them, right?), ribbons, washi tape — the list can go on! But… you don’t need to be a small business owner to appreciate these products. Perhaps you just really love and find joy in well-presented packages. Well, let me introduce you to CraftSchmooze and their uber-cute Personalised Santas Workshop Labels (£4.99+) available in red with gold or silver foil. I absolutely love the vibrant, Victorian-feel of these. They’re elegant and super traditional and would make any present extra-special to open. Owner Gemma told me that they had to quit their dream job after 20 years due to the struggles and physical demands it had on their fibromyalgia . Check out their Instagram for more awesome personalized products. 13. Nasal Feeding Tube 10″ Bear by Fused with Love The Nasal Feeding Tube 10″ Bear (£23.20) is just one of the many diagnoses bears created by Fused with Love. You’ll also find ostomy bears, PICC line bears and many more. These bears are honestly the sweetest addition to any bear family (imagine introducing them to children from an early age to raise awareness of chronic illness ), but I think they are especially perfect when gifted to someone who lives with the condition represented by the bear. The description for this product is just so perfect: “a look-a-like buddy for you or your cutie with a tubie.” Owner and founder, Rachel, told me that they started Fused with Love to create fun awareness items for anyone living with a chronic illness or disability. As for their own journey, they live with Ehlers-Danlos syndrome (and co), dysautonomia , chiari malformation , craniocervical instability and chronic lyme disease . Check out Fused With Love’s Instagram where you’ll find customer images of the bears with their look-a-like humans. SO CUTE! 14. Stay — An Illustrated Zine on Coping with Suicidal Thoughts and Self-Harm by Soft and Fierce I think this would make such a special and meaningful gift to anyone who has experienced suicidal thinking or self-harm. The Illustrated Zine (£8.21) is based on the maker’s own experiences with suicidal thoughts , self-harm and life with mental illness , but also draws upon their studies and experience in social work. As I think back to my own suicide attempts, I honestly believe receiving a gift such as this one would have meant a great deal to me because it is both personal and hopeful. Ania is a queer, autistic and chronically ill/disabled self-taught artist who learned how to draw during recovery from a suicide attempt and while they were struggling with grief and C-PTSD. Ania told me that they aim to create a space for healing self-expression through a trauma -informed, anti-oppressive lens that centers disabled qtbipoc folx. You can follow their work and journey over on their Instagram . 15. Mindfulness Glitter Rainbow Sunset Mental Health Enamel Pin by Self Love Tool Chest Self Love Tool Chest has so many awesome pins, so believe me when I say that choosing just one was really challenging. Don’t trust me? Go check out the rest of them! You’ll find a range of anti-racism pins, along with more mental health awareness ones. So, I did have to choose and, oh my, it’s a good one: this Mindfulness Glitter Rainbow Sunset Mental Health Enamel Pin ($16.00) would make such a thoughtful gift. I think we all need a reminder to stop and be present, especially in the midst of this incredibly painful year, so whether you choose to send it directly to a family member or friend (there’s a lush gift wrapping option, too!), I’m sure they’d be grateful for the reminder to slow down and take a moment to look around. After being fired from their first full-time job and feeling completely lost, Nia decided to try making stickers and just three weeks later, their business was born! Nowadays, Nia focuses mostly on enamel pins, which is where they say they are happiest and are able to express their art and creativity. You can follow Nia’s business Instagram account, or for a more personal view into eating disorder recovery, body positivity, and anti-diet content, you can also follow their personal Instagram . So, there you have it: 15 absolutely awe-inspiring makers and business owners for you to support this holiday season and beyond. This was such an incredibly fun article to write and I also discovered many makers I hadn’t yet heard of, and believe me when I say I spend all my days on Instagram, following small businesses and making lists of all the items I’d love to, one day, gift or own. I really hope you enjoyed reading and that you found something you were looking for (or weren’t — we all know how that goes)! If you’re looking for more disabled makers/business owners to support, I highly recommend checking out Nina Tame’s “ Disabled Shop Owners” highlights because that list is huge! Also, give Nina a follow, too, because she’s a badass disabled activist who makes me laugh a lot. We could all use that. Should you want to, you can also check out my own work via my Etsy store  and follow my Instagram for acrylic jewelry and more spoonie-related content, along with my musings on life with mental illness .

Community Voices