Ataxia

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    Community Voices

    My First Post!

    Hey. Hi! 😊
    Neurodivergent and proud ❤️
    I have a White Cane too and I am not afraid, to use it!
    Spinocerebellar Ataxia Type 27 ....
    Challenged mobily but I am a ' Glass half full' ....as opposed to 'half empty' kinda Woman. I try and most often do keep positive, regarding my inabilities and turn them into abilities IF I can...

    It's just nice to find others who share the same kind of attitude and also who find friendship while being able to be open and honest, about what affects them.

    I am a Writer, Author, Poet and Mother. I am a MASSIVE believer in the Neurodiverse Movement and encourage equality and respect in everyone, for everyone.

    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

    I broke. Now what do I do?

    I was seconds and inches from hitting my breaking point for far too long. I knew it was coming, just didn't know what it was going to be like. I thought I'd yell at the wrong person, or make a bad decision with ugly consequences, but no. Stressed out to the max, unable to cope, unwilling to continue on this downward spiral and fighting non-stop to hold on because there HAS to be more to life than this....

    I had a stroke. It didn't hurt and I wasn't even alarmed or concerned because I didn't realize anything bad was happening. I just felt... blank. This was 2 weeks ago now and none of my stress has diminished. It has compounded actually.

    I don't know what to do. Deep down inside, I know I'm dying. I don't want to though. I want to live long enough to at least figure out who tf to take this out on besides myself. I'd really like to know if I'm more angry... scared...or sad at my own loss. I hate that these words apply to my real life- I'm not just setting the scene for a character in one of my books.

    I don't know what to do. Please at least tell me I'm not alone. I am feeling soooo lost right now. #TraumaticBrainInjury #PTSD #Depression #CPTSD #Ataxia #PissedOff

    7 people are talking about this
    Community Voices

    Who say having a rare disease has to stop us?

    <p>Who say having a <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> has to stop us?</p>
    1 person is talking about this
    Grace Robinson

    What People With Mitochondrial Disease Want You to Know

    Since September is Mitochondrial Disease Awareness Month, I thought this would be the perfect opportunity to share with you some of the thoughts and opinions of the mitochondrial disease community. To accurately represent the struggles and realities the mito community faces, I decided to ask members of the mitochondrial disease community to participate in a nine-question survey about their lives with mito. Here are some of the answers: 1. What is living with mitochondrial disease really like? “It’s a full-time job. There isn’t a time of the day where I cannot be sick. You don’t ever get better, you just have different severity of symptoms depending on energy levels. It can be physically and mentally exhausting. It’s very isolating in the medical community because no one knows anything about it.” — Emilee C. “Lots of unknowns.” — Alexis K. “It sucks… OK, but really, it’s incredibly frustrating. I haven’t been able to walk, move, or even breathe on my own since I was 3. Not being able to move on my own has also weakened my bones and I’m always afraid of being injured or fractured (it’s happened quite a few times). Having to use a ventilator 24/7 has its challenges as well.” — Connie M. “Tiring and complex.” — Emilie T. “It’s not fun. I have a lot of insecurities about my body and struggles with self-confidence. I think that the hardest part of living with mito for me is that I feel like I never fit in anywhere. I’m a college senior and I look healthy but have to go to all these doctors’ appointments and I wear hearing aids and glasses. My sister passed away from lack of energy from mito five years ago. It’s just tough finding my place where people will accept me even though I don’t drink or party.” –Katherine C. “Mito affects every single thing I do daily. Mito is exhausting mentally and physically. It is stressful always trying to get help. It is central lines, feeding tube formula, wheelchair.” –Kristina K. 2. Are you afraid that people will judge you because of your illness/disability? “Yes, absolutely.” –Emily S. “Hell no, they can kiss my a**.” –Nate W. “Yes, I have already been judged multiple times because of it.” –Kailee P. “Yes. I’m always afraid of pity and feeling like a burden. I hate having to ask for help but it’s my cross to bear.” –Emilee C. “Yes, I run IV fluids daily and the looks I get from people are depressing.” –Kristina K. 3. What is something people often say/ask you about mitochondrial disease that you wish they wouldn’t? “It could be worse.” –Alexis K. “You’re exaggerating. You are a hypochondriac.” –Samantha P. “Can she talk?” –Emilie T. “Feel better” –Tayla R. “Are you better yet?” “Are you still sick?” “I wish I had the problem of not wanting to eat.” –Emilee C. “Everything is in your head and mito isn’t real.” –Kailee P. 4. What are some ways you feel limited by mitochondrial disease? “I feel limited pretty much in every way physically. I feel limited socially as well, I think. A lot of people just see the disability and don’t really see the person behind that, so it’s just difficult at times to interact with others and make friends.” –Connie M. “I feel limited by the fatigue, it’s exhausting. I also feel limited by my body and I hate having to be so careful so I don’t hurt the next day.” –Emily S. “Not being as physically able to do things as others my age.” –Samantha P. “It’s hard to travel alone with all the liquid and powder medicines I take. I hate that people think I’m a normal adult who can drink and go party. I feel like I’m limited by how much I can do in a day. It sounds cheesy and relatable to mito patients but I want to be like other college grads who get full-time jobs and date and get married. There are just some things I don’t think I have energy for, like my internship is already exhausting from home.” –Katherine C. “Not being able to drive.” –Nate W. “Limited quality of life, limited funds, energy, spoons.” –Tayla R. “I feel limited in everything I do.” –Madison G. 5. What symptom of mitochondrial disease affects your life the most? “GI or motility.” –Alexis K. “High and low blood sugars from diabetes.” –Emilie T. “Having seizures.” –Nate W. “The fatigue, especially the brain fog. I naturally am a talk fast, think fast, walk fast, type of person — except some days I can’t even process what others are saying to me and I feel exhausted walking across a house.” –Devin S. “I think it’s the muscle weakness.” –Kailee P. “Migraines and ataxia.” –Madison G. 6. Are you comfortable openly talking about your illness/disability? “Yes and no.” –Emily S. “I am when people are open-minded.” –Kailee P. “Yes, for the most part.” –Madison G. “Yes, I am now, but I still get anxiety when I’m the center of attention about it.” –Emilee C. “Yes, most of the time but it can depend on the person I’m talking about it to.” –Kristina K. 7. What is the hardest part about having mitochondrial disease? “Feeling like I’ve been erased, like people don’t see me or who I am. Having to trust others with every aspect of my daily life, health, and overall life. Being abused by people who took advantage of that.” –Connie M. “People don’t know what it is, and I have to explain it. Also, I don’t have a genetic diagnosis, just a clinical one, which makes it harder to know what treatment to use.” –Emilie T. “Being isolated and having friends fall away.” –Samantha P. “Accepting grief and coping with it.” –Katherine C. “Not being able to live a normal life like everyone else.” –Nate W. “Having no support outside of friends. No one seems to care or support us since it’s chronic.” –Tayla R. “Watching those I love with it (sibling and friends) suffer with it. Knowing that we can’t predict our futures so at any point it could dramatically go downhill. But friends are also the best part of mito as well and I wouldn’t trade them for the world.” –Devin S. 8. What do people not know/get wrong about your illness/disability? “How difficult pain can be some days.” –Alexis K. “How much it affects my everyday life.” –Samantha P. “That I can look good or seem OK and that means I’m not in pain or feeling pretty horrible. It’s easy to fake it some days and so many assume I’m less affected than I am.” –Devin S. “Most people don’t know that everyone is different.” –Madison G. “I work so hard just to do the bare minimum and it still doesn’t feel like enough.” –Emilee C. “People don’t understand that my diseases fluctuate from one day to the next. Some days are good but others are bad. I can do something one day and the next day I can’t do it.” –Kristina K. 9. What is something you wish people knew about mitochondrial disease? “It’s not a ‘one size fits all’ situation and having it doesn’t take away your right to live your life.” –Connie M. “That just because you can’t see it, doesn’t mean it’s not real. Also realizing how much mito affects our lives.” –Emily S. “I wish that people knew the different ranges of how badly it can affect a person. I hope that makes sense. My sister couldn’t walk or talk or eat, but I can do all of those things and I seem like a normal college kid. But no one knows that I’m struggling with my mito symptoms till I tell them.” –Katherine C. “We can all look totally different and have different symptoms but can still be valid.” –Tayla R. “That we’re not asking for pity, that we aren’t your inspiration, and that this is our norm so please don’t project your feelings/worries onto us.” –Devin S.

    Community Voices

    Having FND is horrible.

    <p>Having <a href="https://themighty.com/topic/functional-neurological-disorder/?label=FND" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8100553f33fe99303c" data-name="FND" title="FND" target="_blank">FND</a> is horrible.</p>
    21 people are talking about this
    Community Voices

    Ever heard of Ataxia?

    Today is International Ataxia Awareness Day. I have Spinocerebellar Ataxia Type 2. This is a rare disease that effects balance, speech, swallowing and gives a person terrible tremors. There are many different types of Ataxia with their own symptoms. This is just what I deal with. Did I bring awareness to anyone today?? ❤️

    4 people are talking about this
    Community Voices

    "Heather, you're full of self pity and that's the crux of your problems".

    Is she serious? Well thank you kind soul for enlightening me about the core source of my problems. I'm sure that the doctors are wrong and I did not actually endure Traumatic Brain injury, and I do not really have PTSD, MDD, Ataxia, and Amnesia as a result of my motorcycle accident. Did they forget? Sure complained about the noise it made, and the fear it brought them when I rode my Harley. I bet their right though... I don't really have a limp now. I fake it because it's fun. And I like it when people make fun of me so I fake those things too. And who doesn't thoroughly enjoy insessant and anguishing physical pain? That's right...I probably just need to stop over-exaggerating. Oh and yes, I'm sure I do owe you an apology for my dramatic and theatrical fall. How embarrassing that must have been for you to be seen with me by all those...strangers. You know what's pathetic in my opinion? I listened to you vent about your very high-class problems, but if I vent I'm full of self pity. Here's a newsflash....last time I checked, (Mom, sibling, significant other, landlord, friend, or whoever else) I carry myself with more dignity, emotional and spiritual intellect, survival instinct, and sincere concern for how I might effect others than you will EVER know. As soon as you'd like to step into my shoes for a day, I'll welcome your criticism. Until then close your mouth or you'll start catching flies.

    6 people are talking about this
    Ambre M

    A Letter to Doctors: Please to Listen to the Chronic Illness Community

    Dear Doctors: We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional negativity added to us. What we don’t need is for you to medically gaslight us. That’s not acceptable. Not in any way. We know that as a rare disease patient, or a chronically ill patient, we can be complex. We already know this. We don’t need reminding. Many of us struggle with being heard. Unfortunately too many of us have been dismissed, belittled, ignored. Too many of us have been gaslit by those who are supposed to help. Medical gaslighting is term used to describe doctors or medical practitioners who blame a patient’s illness or symptoms on psychological factors, or deny a patient’s illness entirely, for example wrongly telling patients that they are not sick. Medical gaslighting is prevalent in the chronic illness/rare disease community. So many have experienced it. Oddly, many have experienced this with neurology. Neurology seems to be the one specialty many of us experience this with. So many tell us it’s in our heads, go to counseling, or we’re just looking for something to be wrong. We’re easily dismissed. This leaves us frustrated, confused and angry. Some patients have developed PTSD from the traumatizing experience within the healthcare system. We experience negativity, dismissiveness and unacceptable behavior from doctors to the point we have developed PTSD. That is extremely concerning. This is causing us to mistrust doctors; some even avoid them for years for fear of this reoccurring. What prompted this “letter,” you may ask? Well, I was referred to a neuromuscular doctor. I saw him about two months ago. He was great at the first appointment. He said there were signs of ataxia and multiple sclerosis (MS). I saw him again August 9th. He did a complete 180. Appointment was less 10 mins, closer to five. He said no MS, which is fine. I asked if my Ehlers-Danlos syndrome (EDS) diagnosis plus my collagen gene mutation could cause the muscle fatigue and such. He said maybe. Then…then he really upset me. He said “let’s not look for anything else to be wrong, OK?” Not the worst to say, but still awful. Obviously, I don’t want extra diagnoses. However, his next comment and note in my chart really solidified why I struggle with neurology as a whole. He stated at some point if surgical intervention is needed, a psych evaluation should be done beforehand. I have never asked for a surgery or test. I have never been through a surgery that was not absolutely necessary. What?! Why? Why is this what neurology always falls back to? I’m genuinely baffled. It’s insulting and so unacceptable. I posted my experience in several support groups. It was overwhelming to hear how many have similar experiences with neurology. As a dysautonomia patient, neurology is one of the specialists to follow that diagnosis. Yet, many don’t want to, or they’re dismissive. Our symptoms are real. Our pain is real. Our concerns are real. It’s not all in our heads. It’s not just mental health or depression. Yes, we can develop depression and anxiety. However, let’s look at it subjectively. We’re chronically ill. We go to doctors to help us. We’re turned away, dismissed, ignored, told to go to therapy. How could we not develop anxiety or depression? Perhaps both are reactive to what we’ve experienced? Perhaps both are reactive to living with a life-altering diagnosis? Yes, I’ll say there is some depression. Yes there is some anxiety. However, it is most often not the cause of our symptoms. Some already attend counseling in practice of mental health and self-care. Not everyone with chronic illness is depressed. Not everyone with chronic illness has anxiety. You can be chronically ill and have stable mental health. It is possible. I am a strong advocate of counseling and self-care. A strong advocate of discussing mental health within the community. We want help. We want to be listened to. Most importantly, we want to be heard. We want to be treated with respect, kindness and compassion. We want to work with our doctor as a team. We want to trust our doctors. We want to work together. We want open communication. If you don’t know how to help us, say that respectfully. Set your pride aside and think of the patient, of us. Please hear this plea. It’s not just a plea from me. It’s a plea from the rare disease and chronic illness community. Let’s work together to create change. Let’s work together to refine and improve our patient-doctor relationship. I have hope we can do this, together. Sincerely, All of us.

    Brandi Fulton

    The Reality of a 'Typical' Day, Week and Year With Health Anxiety

    One day. 5 a.m. I’m frantically Googling the percentage of people diagnosed with lymphoma at stage four, the life expectancy of lymphoma under 40 and rare side effects of chemotherapy. 1 p.m. I’m giving myself a Romberg test I saw on YouTube to see if I have sensory ataxia. 7 p.m. I’m measuring my blood pressure in eight-minute intervals to see if I have orthostatic hypotension. I take it five minutes after lying down, 30 seconds after standing up and two minutes after I sit. I lie, I sit, I stand, lie, sit, stand, lie, sit, stand. My left arm is covered in red scratches from scraping the machine cuff on and off. Seven days. Monday: I’m bent over the toilet with my iPhone flashlight examining my poo to see if it’s black, pencil thin, smeared with blood, yellow, floating, fatty or covered in mucus. Tuesday: I’m taking many, many pictures of my poo. I do it with the lights on and off and then the flash on and off to get the most detailed pictures. I rush to the computer to compare it to the images of colon cancer found on MedicineNet, WebMD and the American Cancer Society’s website. Wednesday: I’m hiding in my closet and meticulously searching my breasts for lumps, swelling, thickening, dimpling, red nipples, nipple discharge and pulling near the nipples. Thursday: I’m taking pictures of my breasts from all angles and swiping back and forth between them to find the most detailed. I want to make sure I have the clearest one to compare to the breast cancer images found on Healthline, Mayo Clinic and the CDC’s site. Friday: In secret, I’m downloading a microscope app to examine my skin for moles that are asymmetrical, have irregular borders, are bleeding, waxy, scabbing, scaly or red. Saturday: I download an app that diagnoses moles, and it finds something suspicious. I anxiously wait until Monday to call my dermatologist in case I have squamous cell carcinoma, basil cell carcinoma or melanoma. Sunday: The day of rest. 12 months. January: I’m waiting an hour in my doctor’s waiting room for him to fill out a requisition form for a complete blood count, basic metabolic panel and lipid panel. He says, “40 is when things start to go wrong.” February: I’m playing phone games for two hours as I wait in line to have a diagnostic mammogram and breast ultrasound. My doctor is concerned and says, “Your sister died young from breast cancer. We just need to be careful.” March: I’m at my optometrist’s office for a full exam and she tells me to come back immediately if I start to see lots of floaters or flashing lights. “That means your retina is detaching,” she explains. April: A month off from diagnostic tests. May: I’m freezing on an exam table in a blue gown, naked from the waist up. My doctor hands me an ultrasound requisition form because, although he can’t feel a lump, “It’s hard to feel breast cancer in young women. Always come in as soon as you think you feel something!” June: I’m starving for 12 hours because my bowels have to be spotless for my flexible sigmoidoscopy. My internist has me in the fetal position, in agony, searching my rectum and lower colon for inflammation, ulcers, abnormal tissue, polyps and cancer. My mom warns me, “Brandi, colon cancer runs in our family.” July: I’m once again naked and freezing, waiting for the dermatologist to inspect my body for suspicious lesions because my mom said, “Me and all four of your siblings had skin cancer.” August: My doctor is on holiday. September: I’m pinched by an IV for three hours to prepare for a polypectomy and a dilation and curettage. My gynecologist is searching for uterine polyps because, “I see something suspicious on your ultrasound.” October: My neurologist is sending me for a CT scan because she says, “Your numbness, tremor and tingling are probably just anxiety but let’s rule out any sort of brain lesion.” November: I’m naked again, freezing again, waiting for my gynecologist to scrape my cervix because he says, “Cervical cancer is rare, but you never know.” December: Everyone’s on Christmas vacation. I don’t want to know all these terms and symptoms, and yet, here I am. I’ve never been diagnosed with any of these diseases, but sometimes I live like I’m preparing to die. Can you relate? Let Brandi know in the comments below.