Dysautonomia Support Network

@dysautonomiasupportnetwork | partner
A U.S. based 501 (c) (3), non-profit organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders.
Mo Matus
Mo Matus @mo-matus
contributor

Feeling Reduced to Acronyms in Life With Chronic Illness

I live in a world of acronyms. At first, they were purely medical. EDS, POTS, PCOS, UC, MCAS, CPTSD, IBD, etc. They, along with their cousins who insist on being called by their full names like some pretentious teenager after returning from a semester abroad, would accompany me to doctors’ offices. Once there, I’d rattle them off in a jumbled version of the alphabet that almost sounded like a beat poet with an even more than usual preoccupation with death and suffering. Soon, as these all caps conditions began to morph from a cluster of words into unbearable clusters of symptoms, I became surrounded by even more acronyms, this time representing other humans and the systems and organizations they worked under. I was led to believe these abbreviations were designed to take care of their corresponding conditions that were in turn taking up space in my body without paying rent, much like the folders of test results, paperwork, and imaging discs stored in moving boxes around the house. As the looks on caregivers’ faces became more and more confused as I tossed them around, beginning to forget that not everyone spoke this Language of Disability, I began to pray for something, anything, that would make my inner reality visible to the world at large. I desperately wanted an interpreter so my labels could be recognized, expanded, researched, and dealt with. Anyone with a disability who has gotten this far through life and this perverted Sesame Street lesson is no doubt already emotionally shaking their head at such naiveté, or just laughing. They know what I now do. That no amount of time is enough to engage someone in a lesson semantics, intricate medically dynamic systems, social service blind spots, and what symptom or person corresponds with what tile of Satan’s Scrabble. To this day, I am honestly not sure which is more painful, the betrayal of my body and the community I thought was supposed to protect me, or that of the letters that brought me books, pen-pals, and subtitles to foreign films. Normally so helpful in communication, these simple little symbols that used to be my friends, my tools, my means of navigating the world with compassion turned on me with all the fury a font could muster. Instead of helping me with survival by giving names to pain, they refused to act as guides. Instead, they laid themselves out on a page, making me look more like a car than a human. A prisoner whose real name was stripped away long ago by illness and insufficient government programs and ironically replaced by a string of meaningless lines on a hospital wristband or stuck to a tube of blood. Was it my fault? Did the repetition, and ultimately subsequent TED-Talk-long explanation of their true meaning insult them? Were they pissed off that their power was stripped away by constantly having to repeat them as shorthand for galaxy-sized complex experiences of disease? Did they choose to rebel against a system not built to care for actual, nuanced souls, but dissected them into little bits of a whole, just like themselves? Could it have hurt them to see their own reflection as nearly useless to anyone without a translator? Or did they just become simply as confused as me? I still hope my letters come back as friends. That the alphabet I learned as a child will combine and recombine in more of the glorious possibilities we were promised, in the forms of stories full of life instead of languishing on a chart or stuck in a file cabinet. Not reviled, misunderstood, or short-changed. That they return to their nature as incantations, anecdotes, lyrics, poems, and even if a death sentence, at least a full goddamn phrase. Maybe it’s time to save my darlings. The world hasn’t been kind to either of us. Let’s go show them what we stand for.

Georgina Drake

How to Live Life With an Undiagnosed Chronic Illness

Living with any sort of illness can be difficult, but when doctors don’t know what’s wrong or how to help life can seem almost impossible. When I was undiagnosed and bedridden for three years, I vowed to myself that if I ever found out how to make such a dark and difficult time better I would shout it from the rooftops. Not literally, but I would do my absolute best to get the message out there to people who are struggling in the same way. So, these are my tips for living with an undiagnosed illness to feel better physically and mentally. As well as everything I wish I knew. Firstly, I want you to know that you don’t necessarily need a diagnosis to get better. If all of the medical tests are coming back negative, but you are really struggling, you can ask to be treated on a symptom basis until they find out what’s wrong. This is not an ideal way to treat a patient, which is why doctors do not typically offer such treatment but, if they reach a point where they do not know what is wrong– or even say that nothing is wrong, you can ask for your symptom(s) to be treated in the meantime. There are medications for almost everything, so as long as you are clear about how this is affecting your quality of life your doctor can work with you to find something that helps for the time being. The next thing I want you to know is that just because all of the tests have come back negative so far, it does not mean there is nothing wrong. There are thousands and thousands of medical tests out there, as well as those that haven’t been invented yet, so even if you had all of them and they all came back negative, it does not mean nothing is wrong. If you have had five tests, for example, and your doctor says nothing is wrong, I want you to know that what he really means is that you simply do not have one of those five things he tested for. There is no way he can know or say that nothing is truly wrong. Following this, my next tip is that you do not need to know what is wrong to tell people you are ill. I used to make myself even more sick “faking being well” and making excuses for why I could not do the things that everybody else could. It is absolutely OK to tell people that you are not well if you need to. This one sounds quite strange unless you have personally been in the situation, so here are a few examples of the wording you could use: It is OK to say, “I’m sorry, I’m not well at the moment so I can’t do that,” or “I wish I could, but I’ve been quite ill lately.” You can say these things to whoever you need to, whenever you need to, and it is completely up to you whether you expand on it or not. The next one is a tough one and it is that this can be the darkest and hardest time you will ever have with your health for so many reasons. An undiagnosed illness can be difficult to talk about, difficult to treat and difficult for even you to understand, let alone other people. However, with this supposedly being rock bottom, things really can only get better from here. In terms of your physical health — persevere at the doctors as much as you are able to, there are so many tests that they can run, places they can refer you to and medications you can try in the meantime if you advocate for yourself. Lastly, in terms of mental health, I want you to know that whatever you are going through, I believe you. No matter how many people have told you there is nothing wrong or it is all in your head, I believe you and I never want you to doubt yourself either. You know yourself best and you know when something is wrong, even if doctors cannot give it a name. I also want you to know that there is hope, even if you cannot see it. Things can get better, even if you do not know how or when and even if only a little bit. Keep hanging in there.

Chelsea Harding

Finding Hope During Difficult Times With Chronic Illness

“We can’t find anything wrong with you.” My stomach started churning. Those are the worst words you can hear in medicine when you know that something is clearly very wrong. My autonomic nervous system was on hyperdrive, giving me hot flashes where I’d turn flushed, and make my blood pressure and heart rate go all over the place. I wasn’t able to sit up without feeling like I was being crushed to the ground, and this reputable hospital is telling me there’s nothing they can find except severe POTS. I was on a downward trajectory for the past year, with over 20 hospitalizations for fainting and autonomic issues, and they’re telling me they don’t know what’s incapacitating me. I was so defeated and was quickly losing any fight I had left in me. I made the phone call on a whim. I didn’t have high expectations; I’ve learned to lower them when I meet with physicians so I’m not as disappointed when they can’t help me. I realize that’s quite pessimistic, but it became my defense mechanism. So I made an appointment at Johns Hopkins. I had to wait months to see the specialist. To say they were grueling months would be an understatement. Words cannot describe how incapacitating this time was. My body was exhausted. I needed to constantly lay down. If I sat up, I would get a headache that felt like I was being crushed to the ground. I was tired of going to appointments. I was overwhelming to nearly every doctor that met me and was still getting sicker. My heart was making mistakes now. In my gut, my PCP and I knew it had to be somehow a brainstem reaction to something that was angering it, but my previous Chiari decompression surgery was successful. So everyone was left scratching their heads. For the umpteenth time, I set out to meet with the doctor at Johns Hopkins. I was feeling dejected and pretty close to giving up when I met with the doctor. My mental health was not in a good place. I felt like this exhausted, massive burden to everyone who knew me. I felt that I didn’t deserve to be alive. However, as the doctor pushed on the back of my skull and made me want to throw up and collapse, he said “I know exactly what’s wrong with you. You need surgery to put in a plate to reinforce your previous surgery. When you’re upright, your spinal fluid is collecting and putting direct pressure on your brainstem, causing a lot of your symptoms.” I went numb with shock. I wanted to cry, scream and yell. I was grateful this doctor knew exactly what was wrong, but simultaneously frustrated that it took over 20 hospitalizations and being on bedrest to get to this point. It was a strange, polarizing emotion. I chose to go ahead with the surgery; there wasn’t much of a choice in my opinion. Do I feel perfect? No. I constantly remind myself this surgery takes a year to heal from and I’m only two months into recovery at this point. However, I’m sitting up as I’m typing this — something I wasn’t previously able to do. I can go for walks and walk in a store. Sure, I need to take breaks and to lay down after, but it’s a complete 180 from where I was in September. Why share this story? To let you know that whatever you’re fighting can get better, or how you cope with it can. Your current situation is not necessarily your forever situation. Do not lose that part of you that gets you up in the morning, ready to fight another day. Hope is an incredibly powerful emotion. Even if you have to dig down deep with all the strength you can muster, there’s some fight left in you. And you know what? You’re worth fighting for.

What to Do When You're Stuck in Bed With Chronic Illness

Every one of us has had really bad, symptomatic days where even getting out of bed can be a challenge. There are also the surgeries that always take extra time to heal from because our body does not want to play nice. Being stuck in bed can be boring, lonely and isolating. However, many of us living with dysautonomia, Ehlers-Danlos syndrome (EDS), Chiari malformation, mast cell activation disorder (MCAD), gastroparesis and all of those other comorbidities along for the ride have become very adept at making those days easier. Our Dysautonomia Support Network (DSN) members really outdid themselves with this list! It has a ton of great ideas to keep your hands and mind occupied as you recuperate. There are a few overlapping activities we all seem to enjoy – Netflix, Facebook, reading or arts and crafts – but this list is bound to have something on it new for you to try the next time you are stuck in bed. “Listening to audio books.” – Stephanie H. “Coloring!” – Allison R. “Binge watching TV shows on Netflix!” – Kimberly H. “Reading and YouTube.” – Scott T. “Adult coloring books, puzzles, books, no sew blankets and painting. Those are just a few of my favorite on hand for times like those and for the just blah days.” – Lorra B. “Word games – electronic, on paper, out loud, and in books.” – Sarah W. “Knitting, Netflix, Facebook.” – Allison K. “The internet, reading stories, etc. Coloring. Listening to music.” – Britt M. “Netflix, Facebook, Minecraft.” – Mariah M. “Meditation, Netflix, reading, Words With Friends, oil diffusing.” – Kelly M. “A fish tank by the bed can be a welcome relaxation inducer that I highly recommend. Even a 2-5 gallon beta tank can be amazing to watch.” – Jamie P. “Binge watch Netflix. Do word puzzles, arts and crafts, and study.” – Jennifer G. “Podcasts, adventure games on my iPad.” – Jacque S. “I’m puzzling my way through the seasons.” – Melissa B. “Video games and YouTube.” – Molly M. “I watch ASMR videos on Instagram and YouTube, especially when I have a migraine.” – Michele D. “Audiobooks, podcasts, and guided meditation. Basically any audio based stuff. When I’ve been bedridden, I usually don’t have energy to write or watch stuff.” – Christine T. “Bullet journal (also practical and tracking pain/symptoms), knitting, crochet, PlayStation/Xbox, board games (if you’re not alone), learning new language/skill.” – Tessan B. “Laptop/tablet, coloring by numbers, magazines and a remote.” – Missy S. “Coloring, naps, movies, crochet, crosswords.” – Jennifer W. “Reading, crochet, Facebook, games on phone, binge watching TV, Netflix, Hulu, or CBS.” – Heather C. “Puzzles (on a tray table).” – Jessica M. “Meditation apps.” – Jessica K. “Reading, writing, studying, drawing, painting, sewing, puzzles of any kind and of course movies.” – Renae H. “Mini manicures, sudoku, Netflix, podcasts.” – Emily R. “Netflix, Youtube, crosswords, beading, painting.” – Zoila M. “World of Warcraft or Sims 4 on my laptop.” – Caitlin P.S. “I actually could not concentrate long enough to watch a movie when I was recovering from major surgery so I watched a lot of TV sitcoms. I also read a lot on the internet, played crossword type games and Sudoku. I also spent a lot of time listening to music with headphones to distract me from the pain.” – Kelli C. “Volunteering with DSN of course!” – Melissa G. “I would binge watch cooking shows, like ‘Cutthroat Kitchen’ and ‘Chopped.’” – Kali N. “I used to play games and while away the time that way. Now I do survey sites on my phone when I’m stuck in bed and earn a bit of money.” – Hannah G. “Binge watching ‘Game of Thrones.’” – Debbie E. “Sleep (if only!).” – Jamie S. “Sudoku. To see if my brain is still working in any way!” – Mary G. “I’m looking at free courses on Coursera lately. Some look really interesting!” – Beth M. “Crossword app, card pairs/memory app and an  app to help keep your mental speed up!” – Benjamin C. “I paint when I’m stuck in bed.” – Missy M. “I listen to music and of course Facebook.” – Tiffany T. “I listen to music, color, and (obviously) write poetry.” – Hannah W. “Podcasts, audiobooks, reading (DSN Book Club).” – Alexandra R. “TV, Sudoku, logic puzzles, journaling, reading, FB, Instagram, writing, cat-petting, planning, writing cards or sending texts to friends, drawing.” – Rebecca W. “Sudoku, crossword puzzles, reading.” – Jocelyn D. “Karaoke.” – Michelle O. “Knitting, adult (or kid) coloring books, volunteering for DSN ???? and binge watching all kinds of different shows!” – Emi M. “I taught myself how to code when I couldn’t make it into work!” – Meena H. “Good movies, drawing… Facebooking.” – Liza S. “Volunteering with DSN! Also, Netflix, YouTube, coloring, and playing mobile games like Hay Day.” – Rachel M. “Reading.” – Debbie R. What are some activities you would add to the list?

Katie Carone

Learning to Love My Body With POTS, Even When It Betrays Me

Years ago, long before my current three-year exile in bed with POTS (postural orthostatic tachycardia syndrome), I was casually chatting with some friends. I don’t remember our exact thread of conversation, but something spurred me to blurt out, “I hate my body!” The statement came out with such force and vehemence that I startled myself as well my friends, who looked at me with shock and concern and perhaps that “I think she’s lost a few loose screws” look. My comment of self-loathing wasn’t referring to my body image, my short stocky legs, my desire for a flatter stomach, or anything like that. I was talking about the feelings of utter betrayal I felt for my body. At the time I was dealing with severe endometriosis. Not only was I coping with horrible pain, but I was also struggling with infertility as a result. Anyone who has gone through that knows what a deep, dark hole it can create. Growing up I had been taught that my body was a temple – a gift from God and something I needed to respect. I had listened and obeyed. I graduated from college with a degree in health education. I exercised regularly, ate well and avoided alcohol, drugs and other harmful substances. I had done my part to respect and take care of my body, yet where was the reciprocity that should have insisted that my body take care of me in return? I truly felt forsaken by this body of mine. My strongly worded opinion that day revealed the feelings of anger and loss that were brewing underneath what looked, by all outward appearances, to be a perfectly healthy body. Though I’m a bit ashamed at my frequent lack of faith at the time, I am happy to report that after years of struggling with that painful disease, we witnessed a miracle. Our beautiful twins arrived to complete our family, and I was able to have a hysterectomy to help with the endometriosis and pain that had been plaguing me for so long. Only a few years went by, however, before I started to, again, experience regular bouts of pervasive pain that sent me to bed for days or weeks at a time. Once again, I felt the sting of betrayal. What was going on and why was my body not cooperating? Though we suspected autoimmune issues, I had a hard time finding answers and treatments. It was in the midst of dealing with these sporadic flares that I was asked to speak on health to a group of women in my community. This was nothing new – as a health educator and fitness instructor I had given many such presentations before. Instead of turning to my standard spiel on the topic, however, I felt compelled to take this presentation in a slightly different direction. Though I still incorporated some of the typical information on fitness and nutrition, I also wanted to focus on the mental and spiritual aspect of caring for our bodies. I spent extra time doing research and scouring conference talks for ideas and quotes I could use in my talk. Here are a couple of the poignant quotes that really stuck out to me. “Our spirit and our body are combined in such a way that our body becomes an instrument of our mind and the foundation of our character.” – Boyd K. Packer “Our physical bodies are a blessing from God. We received them for the purposes of fulfilling Heavenly Father’s work… The body is the means by which we can attain our divine potential.” – Joseph W. Sitati As I pondered the role of our bodies, my mindset began to shift. I was reminded of an experience I had not long after my mom passed away. My twins were young toddlers at the time – still so easily excited by the simple thrills of life. On this particular evening they were playing and squealing with that full-of-joy, contagious laughter that can’t help but tug at your heartstrings. As I sat on their bedroom floor, grinning at their excitement, I had the sudden impression that my mom was there with us, and I could sense how badly she wanted to give them a hug. As I thought of this experience, I felt immediately humbled. My body didn’t always have the stamina I needed to do everything I wanted to do, but there were still a lot of things I could do that I took for granted – hugging and snuggling my sweet babies being at the top of my list! It was the very week after I gave this talk that my health took an even more dramatic turn for the worse. My body collapsed on family vacation, and I have been mostly homebound and often bed-bound ever since. I’ve thought about this lesson a lot the last three years as my previously fit muscles have turned to flab with disuse. My body has betrayed me over and over again. It has failed to function at the most inopportune times. It has denied me the time upright that I need to physically care for my house and family. It has refused to see me through so many of my kids’ concerts and recitals. I have run the full gamut of emotions – loss, sadness, anger, humility… and even gratitude – not for this trial, necessarily (I’m not that pious, unfortunately), but for the things I can still do. I can work on my computer. I can write this blog post. I can listen to and advise my kids. I can see and feel the warmth of the sun. I can read good books. I can care for my own basic needs (most days). I can hear inspirational talks and beautiful music and welcome their power on my soul. I can empathize and share my love and appreciation for others. At times, I can sit and chat with friends or play games with my family. Though I now share a lot in common with the physical prowess of my 95-year-old grandpa, I can still, on good days, even scale a flight of stairs. And, as previously noted, this broken body of mine can give and receive hugs with those I love. I believe that God is well aware of my situation. If my body is an instrument for my Heavenly Father’s work, as Joseph Sitati declared, then I have to believe that, even in my broken state, God still has a purpose for me and a means for me to fulfill that work. Though I may not be able to be the physically active mom, wife, sibling, friend, kind stranger, etc. I idealistically want to be, I can still be the person I need to be for myself and those around me as I actively seek direction and listen to that still small guiding voice. Yes, I still have times of mourning, anger and discontentment. I’m not even sure, at this point, I can honestly say I love my body – but I am working on it. I do have a newfound respect and appreciation for it, at least. I hope as I continue to creatively seek to help others in the ways I am able and focus on all the things I can do and everything I have to be grateful for, I will learn to love this broken body.

Meredith F.

As I Sit on the Floor After a Day of Running Errands With POTS

I’m writing this from the floor of my sunroom in my apartment. My cat, Dougal, is sitting in his cat tower staring at me unimpressed. I’m trying to convince myself I can stand up, but I’m currently only 60 percent believing in it. This restlessness has seeped it’s way into my soul. My brain is going a hundred miles an hour desperate for my body to catch up, to do anything, but it can’t. I had to call my dad to pick me up after walking around a store today. I didn’t want to make that call. I woke up this morning desperate to get out of the four walls of my apartment and pretend for a few hours that I feel fine. It started before I got into my car. The visual snow that’s never gone away and the slight feeling of walking on a boat each time I stand. However, I pushed forward, buckled my seatbelt and turned my key in the ignition. I made it through a coffee run and all the way to an antique store. I’d been meaning to walk around and see what antiques I could find for decorations for my upcoming wedding. Before I got out of my car and entered the store I knew I was in trouble. The light show had begun, the heatwaves I knew weren’t there were floating along and I could feel the increasing beating of my heart. Still, I pushed forward. When you have a chronic illness, especially in the beginning stages, there are always times where you think if you just ignore the signs and pretend you’re fine they will magically disappear. You buy into the “it’s all in your head” mentality. However, time and time again your body proves this isn’t the case until you finally give in and learn to be your body’s ally rather than enemy. I pride myself on being able to see the bright side of most things and keep a positive outlook most of the time. For example, walking around an antique store while you’re having visual auras is on a certain level kind of fun. It’s like chasing fireflies you’ll never be able to catch. I found myself sitting in a particularly inviting (and at that moment quite necessary) leather chair and staring at an oil painting admiring the swirling colors of the paint. Was the painting actually moving? No, it definitely wasn’t. But inside my brain it was. How many people get to experience that without the help of drugs? Not many. Once my heart calmed down I made my slow progression to the front of the store, ambled my way up the stairs and out into the blinding sunlight. I scrambled to pull my sunglasses on, stumbled to my car, and came to terms with the fact that I just wasn’t going to be able to drive myself home. After a few rings my dad answered. “I can’t drive myself home” I said. “Where are you?” he asked without losing a beat. I told him where I was and he said he’d be there in 10 minutes. Ten minutes later I was sitting in his passenger seat on the way back to the four walls of my apartment. I’m grateful for a family that has been there for me from day one. Who hasn’t questioned me or made me feel bad for needing more from them than most 29-year-old’s would. This isn’t their first rodeo. Chronic illness runs rampant in our family line. So here I am, on the floor, talking to my cat, writing to you, waiting for the moment I’ll feel ready to stand up. This time in my life is painful. Both physically and emotionally. But I know it’s also going to be a time that I will experience the most growth from. My mind is restless and my body isn’t up to par but what better time to figure out what I’m made of, to learn the true depth of the relationships in my life, and to experience the real comfort of laying on a floor. Getty Image by LumineImages

How I Plan to Kick Ass After a Restless Night With POTS

When I’m lying in my bed I’m ready to kick ass and take on the world. After a restless night I take my medication and I set my goals for the day – shower, dress, make the bed, do a load of washing, five minutes on the exercise bike…And maybe I could even cook dinner tonight. I decide I’ll go for a walk, take the kids out for lunch, or maybe even run a small errand. I daydream about going back to work and the amazing holidays we could afford or the renovations we could complete with the additional income. I know this would alleviate the financial stress that my husband is currently carrying as he supports us all. I picture getting dressed and going to my workplace where I enjoy the people, the culture, the values and the purpose, as I know I can still contribute and learn so much. From the comfort of my bed I can imagine fulfilling all the goals and dreams my husband and I have worked so hard for, of enjoying these last few precious years with our teenagers before they become fully fledged adults. I wonder if I might be able to read a book, paint a piece of furniture, sort a cupboard or even sit in the glorious sunshine today. I tell myself that I am refreshed, I am doing better, I am alive and I am grateful. Then, I stand up and reality sets in as the blood pools to my feet, my blood pressure drops so suddenly that I have to adjust and steady myself, the dizziness and the headache start, along with the heart palpitations, the chest tightening and the heavy breathlessness. Showering and dressing can happen these days, but hair and make up are wasted energy saved only for special occasions. I push myself to make the bed for my own self satisfaction and prepare to go out by doing things efficiently and by breaking it down into small tasks. I am excited to drive the five minutes to the shops. I am feeling better, but decide to head straight to lunch as fuel is definitely needed. Just standing and ordering my lunch prompts my symptoms again and a few bites in and my condition worsens and I can’t eat anymore. There is no time for wandering or lingering. I go to three shops in a hurry, with complete focus on what we are there for, as I have no time or energy to spare to go off track. I scope all areas for seats so I know at all times where I can head if the dizziness becomes too much. Within 10 minutes of shopping I can feel my face is pale as the blood has left my head. I’m confused and forget what I’m looking for. I start feeling clammy and sweaty as my body is going into shock from the loss of pressure. I keep moving and hope it will pass. We separate tactically to speed up the shopping and delegate tasks with the precision of a military team with its zombie leader. I lean on the counter hoping it will hold me up as the sales assistant keeps making register errors at the last shop of the day. I’m just hoping that I don’t faint in public. All I want to do is get home! We get to the car and I feel some relief from sitting but my heading is pounding from the exertion and loss of blood flow. I get home and quickly unpack, grab water and anything I may need before I sit down as I know that I’ll be on the lounge for a while to recover from my one hour out of the house. Slowly, my thoughts of painting, walking, and returning to work in two weeks all disappear. Maybe if I rest for a couple of hours now the headache might subside enough so I can cook dinner tonight and enjoy some TV with my family. But tomorrow is another day and I look forward to when I wake up ready to kick ass and take on the world again! Getty Image by cherrybeans

Reanna Mathis

Why It Takes So Long to Get an Ehlers-Danlos Syndrome Diagnosis

May is Ehlers Danlos Syndrome Awareness Month. For those with Ehlers-Danlos syndrome (EDS), it is a time where we get to shout awareness about anything and everything regarding EDS from the rooftops. (Well, maybe not rooftops, but a safe, cushioned wheelchair?) It is because of someone sharing passionately about EDS that led me to my diagnosis after 13 long years of waiting, searching, misdiagnosis and pain. I am not only referring to physical pain, but emotional and spiritual pain, as well. When so much time goes by and the doctors cannot agree on what is wrong with you or tell you that nothing is wrong at all, you start to doubt. You begin to question the reality of what is going on inside your body. I do not remember the exact words and phrases medical professionals said to me, but I remember how I felt. I felt hopeless, alone, confused, disconnected — like I was losing my mind. There were many times I wanted to just give up. I would wake up each morning and be disappointed I woke up. To some people, that may sound extreme but if you live with EDS, you know after five, eight, or 10 years of trying to get answers, you get so tired. Just so darn tired. My symptoms started in childhood, with frequent sprains and minor injuries. I had about 15 ankle sprains by the time I was in middle school. I vividly remember one day in sixth grade when we had an early dismissal and all the kids were scampering towards the stairwell. I made it down the first flight, but as I turned the corner and stepped on the first stair of the second flight, my right ankle just gave out. I tumbled down the stairs and could not get up or put weight on my foot. The other students walked right by me or stepped around me. I was mortified. Eventually a teacher came and carried me to the nurse’s office. It was lots of injuries like this, all the time. I broke my finger catching a basketball when it hyperextended back. Whenever I complained about leg pain or headaches the doctors told my mother it was growing pains or stress. My children are beginning to show signs of EDS and one has Chiari malformation. The pediatrician started to say the words “growing pains” and I stopped him to explain why I preferred he not use that term when treating my boys. It opened the door for a real conversation about EDS and how often it gets overlooked. I was in a bad car accident when I was 22. I hit the Jersey wall on the interstate going 60 miles per hour. I hit it head on, spun around and hit the side of my car, where I then stopped facing oncoming traffic. I had been pushed off the road by another car, in the rain. Nothing was broken. I had no internal bleeding. I had bad whiplash and a concussion, but that was the extent of my injuries. I was very sore the next day. My body hurt in places I did not know could hurt. However, I figured it would pass soon and I could get back to my carefree life being 20-something. That is not how the story went, though. I never recovered. I continued to have widespread pain in my back, sacrum, neck and joints. The joint pain hopped around. Climbing stairs hurt my knees. The doctors were baffled; I was baffled, and all they could do was load me up with pain meds and assure me I would recover eventually. After about a year, it was apparent that something else was going on and the specialist visits started. The imaging started. The testing started. Most came back normal which was upsetting to me because I knew what my body was telling me, and it was not what the imaging was saying. They considered autoimmune because of the markers in my blood tests and began treating me for rheumatoid arthritis (RA). The medications used to treat RA had some very nasty side effects and I gained a bunch of weight. I also started losing my hair and eyesight. It was about this time when my primary care doctor brought up Ehlers-Danlos syndrome. At the time, I did not agree with him because I did not think I had “stretchy” skin. He also did not explain it very well to me and I was still very young and skeptical of anything doctors told me. I wish I had listened to him. I have since moved away from the area but I hear he is treating many EDS patients in his practice. Kudos to him. About six more years passed and an old friend of mine started sharing stuff on Facebook about EDS and how they finally figured out what was wrong with her. I felt like a big light bulb went off over my head. She and I had a lot of the same issues and we used to hang out while relating to each others experiences. I began to get curious. I reached out to her and started asking questions and searching for answers. I educated myself on the illness, because I wanted to be ready to educate my doctors. The more I read, the more everything made sense. It was like someone pulled open the shades and I could see so clearly how the puzzle pieces fit together. I went to my new primary care in the area I now live in and it turns out she was very knowledgeable about EDS. We started setting up appointments with specialists. Not long after, I was diagnosed with Chiari malformation type 1 and hypermobile EDS. Then came dysautonomia, which we are still in diagnostic phase of finding out which one. Then mast cell activation disorder. I also developed borderline gastroparesis, which I would call very slow motility. Then we discovered some medications were not being metabolized correctly. All of my health issues are related to my EDS. Right now, I am being evaluated for tethered cord and a mild spina bifida occulta. I am waiting on a cervical fusion to correct instability in my neck and to help with my cervical stenosis. From my experience, I’d say the first few years after diagnosis are the hardest. I feel like I am climbing a mountain, and at the top I will get to sit down and rest. I will get to feel a little bit better. All the treatments, physical therapy, surgeries and medications are building up a quality of life that is going to be better than what I have now. I have seen other EDS patients do it. I know it can be done. That is why I have faith and keep pushing on. It took 13 long years for me to find answers and earn my zebra stripes, which is why I share my story to raise awareness for EDS. If it saves a patient one day from struggling and waiting, then I will share 100,000 times. I also do this for my children, so they never have to be doubted or struggle to find out why their body is turning on them. I will continue to spread awareness about EDS until my time here is over. Nobody should have to wait five, 10, 13, or 20 years for a diagnosis. We are zebras, and there are more of us than you think. As Professor Rodney Gaharme has said, “No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.”

The Importance of Online Dysautonomia Support Groups

By Scott Turner (DSN Member) Support comes in many shapes and forms for patients living with dysautonomia and related illnesses. The patients look for medical answers and solutions, as well as symptom relief. Doctors and other medical advice are reached for in hopes of accessing all of these. The level of support from this can range from remarkable to a loss of that same hope and a feeling of isolation. There is more that carries us along our paths than the pieces of dependence we put in the hands of the medical field. I have only been afflicted with my illness for a year and in that amount of time it has brought me many different physical and emotional pains. My body’s symptoms are treated with medical care and I also look for the experience of other patients who have paved the way through this before me. When you have a rare condition, sometimes it’s difficult to find others that share the same symptoms. I was fortunate enough to receive the greatest of medical and family support from day one. My family has been imperative to my emotional and physical being, especially at times when I keep my eyes closed to my needs. I will say with all my heart, my gratitude reaches beyond any words of expression for all that my family has done. As time rolled forward, I’d find myself with ever-mounting questions of my disease and wondered if others had experienced much the same. I knew of no one with my condition, so I searched online for whatever information I could find. Medical documents, testing and general information were all there. I found myself looking for more than just information. I wanted to be able to share and compare experiences with others who struggled the same way I had. My youngest daughter suggested that I check out a support group on a Facebook page she had found. I was a little apprehensive, being that I only used it for friends, family and entertainment. Reading the cover of the site was enough to compel me to request to be a member of their closed group. Upon acceptance, I searched their site and found loads of resources that had not even crossed my mind. Information is valuable, but I was still looking for some personal connection to my condition. Their discussion feed was full of many different members’ comments and questions from each day. As I tried to familiarize myself with their medical lingo and the acronyms they were using, I could not help but notice how respectful and forthcoming these patients were with one another. With thousands of members sharing private experiences and their victories and setbacks, I was moved by their openness and willingness to share. It was not a typical platform to harp and rant, but rather to vent frustrations while in need of ideas and support. There seemed to be some intangible bond between these members. This was not the sort of thing that this “private, don’t talk about your problems” 52-year-old man was accustomed to. Sure, I could imagine sharing the light stuff and trivial things, but I could see there was more to this here. That intimidated me. It scared me. Why? I did not have to participate. It looked so revealing and that is just not cool. Men are usually quiet about this stuff. As I safely read the feed in the comfort of my own living room, I could see the members were predominately women. I noticed just one man’s post from a few days earlier. In and out in a flash, that was it. I figured I could just “ghost” along, but that was not what I was looking for. I wanted some tangible connection to my disorder, beyond data on my symptoms. As I introduced myself, I felt like I stuck out like a sore thumb. As it turned out, that was all on me. I was just another voice, another keyboard, another patient or something like that. That’s how I convinced myself to engage. For whatever Jedi mind tricks I played on myself, it opened the door. Once inside, I realized that I did not open that door. They had opened it for me and I just needed to have the courage to meet them as openly as they had invited me. Aside from sharing everything, from conditions and symptoms to testing and treatment experiences, it was much greater than that. Before long I had discovered that connection, from others to my illness. This was the one I’d been looking for. This changed me in ways I could not have possibly seen coming. Chatting with the other members about all their different disorders and their battles with symptoms and day-to-day life was humbling and inspiring. Their respectful and considerate nature had eased the way for me to open my closed vault. I soon realized there was more than just an online community here. They were a family – a family of support, knowledge, experience and a true compassion for all and their illnesses. As every good family does, they even give that little motivational kick in the butt when needed. Not every member is locked in tight, some just pop in from time to time, but that doesn’t seem to make them any less of a part of the family. This family, DSN, Dysautonomia Support Network, has inspired me to open that, keep all inside, vault. The change of my emotional state has changed emphatically for the better. Not only is that just plain old good, it is healthy for the patient in me. Inspired, how? It’s opened my eyes to a whole new world of how complex life can be with any sort of disease and how some are cared for and others have difficulty getting any medical assistance that they require. I could go on and on about this, but maybe in another piece. It is more than just the struggles and compassion for each others’ symptoms. There is the unmeasurable strength, desire and fortitude from each person to press on day after day that leaves me in awe. I sit here writing. I’m not a writer or shall I say, wasn’t? I share my thoughts to digital paper as if it was a part of me. It’s therapeutic, it gets it all out there and clears my mind for the real fight, the one of illness. This family has helped me and in some way, I now strive to help others to not bottle it up like I chose. Rare diseases have so much research needed to be done to fully understand all their aspects, let alone more comprehensive treatments or a cure. I also, now, find myself speaking of awareness and fundraising for these concerns. Who is this guy? It’s me, the ever-evolving new me! My cherished wife and two daughters like this new guy and so do I. This online digital family has opened its doors to me. I cannot put it into words, but this is a family that’s much deeper and greater than anything digital. They are part of my family now and I thank them for that. I look forward to sharing time with this new part of our family as we help carry each other down our paths. I hope to add my own ripples to the many started before me in the light of awareness and support for our growing family.

Lauren Nallia

To the Stranger Who Helped Me When I Was About to Pass Out

I didn’t even ask your name. I could barely hear your voice. I couldn’t turn my head to see you and I never got a chance to thank you. I have dysautonomia, an autonomic disorder that can cause heart rate changes and dizziness. I was standing in the food court at St. Mathews Mall when my ears started ringing. I knew what was happening but I couldn’t do anything. Suddenly, it felt as if I was falling backward or the floor was moving closer. I could see the bench next to me but, I was frozen. I could hear my mom standing a few feet away, but I couldn’t put the words together to ask for help. There I stood, frozen, expecting to pass out and wake up on the floor, but you came and offered help. You brought me a chair and saw to it that I got seated. I closed my eyes to take some deep breaths. Still disoriented, I looked up and you were gone. I want to thank you for choosing to help instead of walking in the other direction. I hope others see the example you set, and choose to follow. I want you to know how greatly your kindness is appreciated. The world needs more people like you! I hope you never let go of the kindness you hold. So many times, strangers just stand and stare, or worse, laugh. I face criticism from people who think I’m faking it. I can feel people’s judgment when I have to have assistance to sit or walk, but you were different. You saw me struggling and chose kindness over judgment. I hope you read this one day. Thank you, for being different. We want to hear your story. Become a Mighty contributor here. Getty Image by Wavebreakmedia