Since 2013, I have been navigating a disease called Ehlers-Danlos Syndrome. I post on issues pertinent to the psychology of living with a chronic illness. I also give the run-down on articles and information I have found helpful and supportive in dealing with chronic pain, finding knowledgeable doctors, and coping with living with an “invisible illness.” Many people with EDS ‘look healthy.’ It is a blessing, but it also makes those who deal with it feel alone and dismissed.

I was diagnosed with Ehlers-Danlos  Syndrome – Hypermobility type (or EDS, Type 3) at the beginning of 2013 by a geneticist at Wake Forest Baptist Hospital. EDS is a heritable genetic disease meaning  you inherit the condition from one or both of your parents. There are many types of EDS, some more severe than others in terms of quality of life and lifespan. The condition is cut from the same cloth as Marfans and Osteogenesis Imperfecta (aka brittle bone disease) which some people have seen portrayed in the movies or heard of in the news.

The word ‘syndrome’ in Ehlers-Danlos Syndrome is of importance. The disease most predominantly effects the joints causing severe hypermobility (appearing very flexible) in those effected with Type 3. The joints are prone to easy subluxation and dislocations, and they do tend to wear out earlier in life. There are secondary complications as well. They can be read about on EDNF’s webpage..

Additionally, muscles take over the job of ligaments and become spasmed and tight. People with Ehlers-Danlos Syndrome if diagnosed  young tend to be a bit ‘floppy,’ but as we get older there is a stiffening throughout the body from the effects of years of muscles tightening to protect the loose joints. The chronic muscle spasm and recurring joint subluxations and joint wear cause varying degrees of chronic pain. So, in me, it is a balancing act to stretch out larger muscles in spasm around the larger joints and to protect smaller joints like my fingers and wrists, which remained very hypermobile.

A brief story about the experiences we have before diagnosis… In my mid-twenties, I was at my doctor’s office in North Carolina for moderate pain in my left hip and SI joint. My doctor looked at my legs and noted one was almost an inch longer than the other when I was laying flat. He did an x-ray of my hips and asked me to schedule to come back. A week later, I had gone for a long walk the previous day. My hips were feeling a little better. My left leg wasn’t swinging as much, as if I had to lift it up more deliberately. My doctor was checking my legs again when he suddenly looked up at me with a perplexed expression.

“Your legs are the same length today. Huh,” he said looking down at the floor and then up at me as if waiting for me to tell him something. I didn’t have anything I could say though, so I talked about my walk the day before and less pain this particular day. I stared at the white walls and squirmed at his white coat and quiet face, and he laughed a little at something he must have been thinking about before patting me on the back.

Like many before me, especially  young women, especially young women that have been shown to down the years have conditions like MS and Scleroderma, serious conditions that manifest early but nonspecifically, I left the office with a note in my chart saying ‘conversion disorder.’ I must have, in my womanly hysteria, physically lengthened my leg with the power of my mind. I sat frustrated in my car in tears wondering if something was wrong with me before deciding I would never seek help again. On the other hand, I could consider becoming a monk with that type of psychic ability to lengthen muscle and bone.

I do believe the human mind can make you feel physically ill, but that is an investigation that should be undertaken just as physical symptoms should be. However, most often neither was the case in my situation nor in too many other stories.

My reaction in the car to never seek help again was over-the-top and it did not last, but I was fatigued from an illness I didn’t understand and from pushing myself too hard at work and in life. Being repeatedly exposed to situations where you’re made to feel ‘silly’ or ‘mentally unstable’ for explaining symptoms that cannot be seen or found on a lab test is a special type of mistreatment in my opinion.

Referencing the bizarre longer leg above, I’m now over six years later being treated for SI joint dysfunction. It took that long. I have over the years had difficulty walking with no answer as to why. Sometimes the muscles around my joint would spasm so severely that the leg would buckle and I would fall. Both of my SI joints, like other joints in my body, move more than they should on both sides. When they are out or muscles are pulling from the irritation placed on the joint, my leg appears shorter.

This is a summary-example of the possible experience of someone with a chronic illness that is not understood, and I’m grateful for discerning and intelligent physicians I found at later points over the  years. EDS is painful and can be frustrating. Going through our imperfect medical system can be traumatic when you are dealing with something many doctors have not treated. The experience above was mild compared to a few others. That is why we support one another in finding ourselves and our voices to speak up respectfully but firmly.

One of the ways I deal with the balancing act of living, coping, and surviving, and living again is through writing about it. I don’t always have the energy, but I think it’s important we share our stories. Because, I do not know where I would be without the amazing stories of hope and despair and joy that have guided me to live more authentically even with these challenges. I am grateful.

Like a lot of people with a connective tissue disease, it took me an agonizingly long time to get diagnosed. At the age of 20, I began my long journey trying to figure out what was going on inside of my body. I look healthy on the outside…I smile, I can be energetic and bubbly, and I’m pretty stubborn I’ve been told. I also take a lot of effort to look well, because I feel like the more okay I look the better I feel. And, I think it is true to a degree psychologically. It is not easy, though. I recommend The Spoon Theory at this point. Please take the time to read it if you are not familiar with it. It applies to everyone, not just people with chronic illness.

Now that you’ve read about The Spoon Theory (you did it, right?), you understand that people with chronic illness only have so many spoons to spare each day. We have to carefully decide how we’ll spend them. Where would you choose to spend your spoons? There are some beautiful illustrations of The Spoon Theory on Tumblr by Heartfilled Minds. For me, I alternate day-to-day…sometimes I want to be with people I love, sometimes I want to write or do photography or walk with my dog, for example. On days I work, I take a lot of down-time. At the end of 2016 I began the journey of trying to work again by taking a part-time job as a barista. It’s been a challenge, but a challenge is what I wanted.

Then, there are a certain amount of “required spoons” for things like “making breakfast,” “taking a shower,” “required physical therapy…” you get the idea. If not…did you not read The Spoon Theory? 😉 It’s such a great metaphor.

Over time, my aim on the blog is to explore the process of acceptance of chronic illness through un-edited reflection and introspection. The main goal for this site is to act as additional support to others living with chronic illness. Please feel confident in opening up and discussing how I can make this a helpful website for you as it evolves. Feel free to contribute your knowledge. I am learning.

A little about me, I went to the University of Florida where I received a B.S. in Psychology minoring in East Asian Languages and Literature. I worked for some years as a mental health case manager, and my dream is to get my PhD in Psychology. Maybe to publish my poems and to travel, but, I am open to anything. I live in Seattle, WA and have been shaped by Buddhist teachings and the love of my father who I lost in 2008 to esophageal cancer. He is an ongoing source of strength for me, and he was simultaneously religious and an avid philosopher. I enjoy hiking in the mountains (very carefully), sitting with feet buried in the sand by the ocean, and reading and talking to interesting people. I have two children (Ember the Shepherd and Apache the Lab) and am married to Daniel who I have been with ten years now. We all need support in our life whether from family or the friends that become family.

Thanks for stopping by and reading.

phoenix by Brooke Shaden Photography
Copyright Brooke Shaden Photography

24 thoughts on “About

  1. Thank you so much for your blog! And number of your issues are similar to mine. I’m a nurse practitioner, and my symptoms began to flareup in my late 30s. I began having problems with balance coordination gate and proprioception. I was sure that I had primary progressive MS and that the neurologist was missing a diagnosis. Unbeknownst to me, my sister was experiencing many of the same symptoms, except that her weakness was primarily in her upper extremities, where is mine was in my lower extremities. She was diagnosed with Ehlers Danlos syndrome two months ago, and I received my diagnosis one month ago. However I’m still searching for the cause of my progressive weakness after standing or walking for too long. The physical therapist tells me I have a AAI on clinical testing, but the imaging studies don’t show it, nor do they show a Chiari malformation although they were not dynamic imaging studies. So if it’s not ARI causing myAAI on clinical testing, but the imaging studies don’t show it, nor do they show a Chiari malformation although they were not dynamic imaging studies. So now I’m exploring whether a lumbosacral plexus neuropathy or some other compression neuropathy could be causing the symptoms, but like you I feel like I have to spoonfeed my treating doctors. At this point I’m considering a visit to the Ehlers Danlos society research center in Maryland. Love your blog!

  2. Hi! I don’t often write on blogs or anything other than general Facebook posts. BUT, I have to tell you, I’ve found myself in tears reading your blog. Your experiences sounds just like mine. Even down to how you describe a good day and a bad day. I don’t have an official diagnosis yet but based on my research and self-scoring, I’m somewhere on the hypermobility / EDS spectrum. My family doctor tells me a diagnosis will do no good and I just need to lose some weight (i’m about 50lbs overweight) and I’ll get better. But I know lots of people that are overweight that don’t hurt and fatigue like I do. It’s becoming unbearable. Going to have to try to find a doctor that will take me seriously. I feel completely lost, like I’m a little crazy or must be somehow making it up, and that I just need to suck it up and get better. Your post helps me realize that it’s not in my head…this is what EDS looks like. My tears are both sadness and relief that I’m not crazy. Thank you for your site and your honesty. It gives me hope. Thank you.

    1. Hi Dani, about being told to lose weight… I have always been pretty small, so I want to say that if a doctor who is not able to confirm an illness is not able to point to weight loss as a solution, my experience has been that the next thing looked at is stress. I was constantly asked about how much stress I was under, how much anxiety I experienced, if I was sad, etc. And, yes, I had a great deal of stress, I had anxiety, and I became depressed on and off as many people in their twenties usually do during what is arguably the most chaotic decade they will experience. None of these things though explained the degree of fatigue or the predictability of my pain levels and where I was experiencing it unless the person was choosing to believe I was “weak” or a “neurotic woman” or maybe simply deciding on a vague and uninformed conclusion that symptoms were a product of depression and anxiety. If I’d been an ounce overweight, that would have been next.

      That our mental health and weight are factors in pain levels and fatigue is definitely true. And, doing everything within reason and within our limited resources to do better in these areas is a good idea. But, it will not fix the problem. I imagine that even if a doctor somehow knew that you had a legitimate illness going on, and if it is EDS, many are uninformed on how much CAN be done to manage this disease. A lot of it is through the patient’s own hard work and determination, because there is no medication that will give you better collagen. But, there is strengthening and stretching and learning about the body and bracing joints and learning how to prioritize your days so you can pace yourself within your own limitations based on what is important to you in life. And these things do make a big difference over time. We can adapt.

      Dismissing you does nothing good to help you learn what is going on so you can best adapt to what is going on. There’s no easy answer. Doctors are simply humans at the end of the day with opinions and biases and egos, and I recommend trying to hold onto that and to not lose faith in yourself and what you know and to speak up. If you have the means, I recommend going straight to an authority on connective tissue diseases and skipping doctors who are dealing with more typical illnesses. If you don’t have the means, find support and keep fighting to find what works for you.

      I once thought maybe I was going crazy too. That’s what sometimes happens when people who have authority tell you that what you feel you are “not really feeling.” Or they look at you with skepticism when you have been opening up to them about what you’re going through with hope and trust. It is a slow crushing of spirit that can happen. It’s interesting to me, over ten years since strange symptoms started, how I can trace the path I took from feeling lost and crazy and like I’d never feel better, to experiences with doctors that left me feeling more lost, to a diagnosis, to denial of the diagnosis after all that searching, to slow acceptance and denial again and finding courage I never knew I still had left to learn. My joints did get worse, and my illness did not go away though my stress levels went down and my ‘mental wellness’ improved. I have worse problems with digesting, strange symptoms related to instability in my spine and chronic muscle spasm, but it’s all become pretty normal. I stopped fighting that this is what my body will do. But I kept fighting for myself. I hope that makes sense. I didn’t mean to write so much. 🙂 Best of luck to you and feel free to friend me on the inspire website in the EDSsupoort community.

  3. Hi! I found your blog when I was searching for geneticists at Wake Forest to diagnose EDS hypermobility type because I already go there for my neurologist for my dystonia treatment every 10 weeks (it is the closest teaching hospital to where I live). I couldn’t find your email, but my blog email is If you could even give me the name of the doctor who you saw, I’d really appreciate it. (I haven’t gotten a chance to match my new blog name to my domain name).
    I keep getting referred to rheumatologists every couple of years because my pain doesn’t make sense, despite my fibromyalgia diagnosis, and I get sent home with a diagnosis of hypermobility and am told to keep up the PT, but I’m getting worse at a faster rate than PT helps right now. It seems like most of the places that I can find that make the diagnosis are for young children. Also, now that my brother is in his early 20s, the same symptoms are showing up, which makes me think it really is genetic.
    Anyway, I would love a diagnosis so my pain specialist would be more justified in continuing the treatment while I do PT, among other reasons. I hope you’re having a “good” day 🙂 And thanks again!

    1. Hi Sarah. Of course… her name is Dr. Jewett. Any geneticist can diagnose Ehlers-Danlos Syndrome in case she is not available. She is a pediatric geneticist, but I was able to get in to see her. I was recommended her for her involvement in the Ehlers-Danlos community and she attends the yearly EDNF conference I believe, but I’m not certain on that. I respect this doctor immensely and wish you well in figuring out what is going on. 😊

      1. Thanks! We called and the wait is 22 months, but they’re brining in a second doctor and are going to call back. I may go somewhere local with a 4 month wait and then go there for a better treatment plan. My neurologist at Wake is top notch and Dr. Jewett’s slides online were very informative. It is so interesting that most geneticists are in pediatrics. Looking back, my parents say that I’ve always fit all of the symptoms, but they just thought I was whiny or faking!

        1. You’re welcome! Keep me updated… I’d love to hear that things worked out and you find the answers to what you’re going through. Having top-notch doctors puts you in good hands. I can tell you that my best doctors were in NC even though I’m living in WA right now. If we go back, it would be great to get set up with them again. 😊 Good luck Sarah!

          1. I saw Dr. Spanos on December 31/January 1 and it turns out that I have severe EDS. I have to go back for braces when the brace people get better. Then I am going to meet with him again.
            He is working very closely with my local doctor for setting up MRIs and testing. She’s calling him every week for more info. She had no idea that there were so many things I that could be done other than “watching” it. Turns out her other EDS hypermobility patient was diagnosed by a rheumatologist that said nothing could be done.
            My brother is getting worse, so he’s waiting on an appointment, too. Until then, he’s seeing a primary care doctor that treats mostly EDS patients in Chapel Hill.
            Going there was the best thing that ever happened to me!

            1. I’m so happy you found answers! I know how difficult it can be when you’re in the dark about why you are having such difficulty. You did great staying strong and advocating for yourself. I haven’t been writing much because of an unusually difficult flare up of fatigue and neurological symptoms this year, but if you ever want to share ideas, please do. I love the idea of collaborating. Regardless, thank you for sharing doctors familiar with connective tissue disease in NC. And, I wish you and your family the best as you get the care you need and live well.

        2. hello Sarah and Stephanie! I have a few questions for you both…I’m about at my wits end with all of this! I have a confirmed P.O.T.S. diagnosis from the Cleveland Clinic and Hunter Hopkins Center here in Pineville, NC. As well as Fibro/CFS from too many places to name…I’m trying to find someone in the Carolinas that treats P.O.T.S. and/or EDS. Sarah could you let me know who the Neuro at Wake is you see? And I’m going to research Dr. Jewett right now. Reading this made me cry to hear someone else understands and at the same time and feel horrible that someone else has to endure this. Its been a rough and lonely road. Any recommendations on Doctors and assistance to finally get some help would be greatly appreciated!

          1. Hi Molly. I’m sorry you’ve struggled so much and I know how lonely it can feel. The good news is you’re not alone. There are some remarkable forums online that provide support through the diagnosis process as well as navigating all of the confusing information out there. A very reputable site is for POTS. You will find a wealth of info on there, and they have a doctor list. is a support community for illness. You can join the POTS and CFS groups. Then I’d suggest Facebook surprisingly. If you message me there, I will add you to some groups.

            Support in person will be important too. So, look up any local support groups. I don’t know if you said you have Ehlers-Danlos Syndrome? If so, can point you to a local support group. Or, you can even start one/get the ball rolling at least. 🙂 POTS is found in most people with Ehlers-Danlos Syndrome. I forget what the prevalence is right now, but it’s high. It’s also more common in the general population too though.

            These are complicated issues, and I’d recommend starting with finding a doctor through the sites above first. And a support network. Best of luck to you and if I find reference to an NC doctor I’ll post it here. I looked this morning, and only saw reference to a cardiologist, Dr. Daw. I highly recommend a neurologist for the long-haul; as POTS is a neuro-disease of the autonomic nervous system. You are not alone in this.

          2. Molly, my neurologist is for dystonia. She doesn’t even know what EDS is–I already tried that route to see if she could get me in sooner. I literally live within walking distance of Pineville. Even though I am in Fort Mill, Facebook thinks that I live there.
            We paid enough for a new car for my POTS diagnosis at the Hunter Hopkins Center. There had to be a better way. I think they’re frauds. He referred me to some of the worst doctors ever. And they all liked each other.
            I’ve been seeing Dr. Spanos in Chapel Hill for over a year. The PT options in Charlotte are bad. My husband and I also hate living here, so we are planning a move to Chapel Hill, where we have friends/family/doctors, as soon as an opening is available in my husband’s company. Not looking forward to selling the house, but they have a lot more ranches for a better price up there.

            1. Sarah I’m sorry you’re going through the ringer. It’s been a similar journey here especially with moving often. I had the best physical therapist is Greensboro, NC if it’s even an option for you. His name was Dr. Fields. Before I was diagnosed, he was helping me with my ankles. They are so ‘floppy’ he said he’d usually recommend surgery, but the manner in which they were moving made him nervous. Soon after, I was diagnosed, and he said surgery likely would have failed.

              Mentioning PT, I really think the right PT is the best answer to most of the issues in EDS. You need someone very intelligent who will see when, for instance, you are recruiting different muscles then normal to literally walk. My current PT has been carefully strengthening my core and helping me slip the SI back in place on both sides. The tailbone slips as well, but she can carefully maneuver it back. Next are hard orthotics, not the flexible kind. Orthotics never worked on me because the ankle roll is so severe. These will have no flexibility in them. I’m seeing some improvement in more acute pain. The muscle spasms do not improve to their confusion. My pyriformis muscle (it wraps around your hip and butt) does not really release. If they force it to relax a little, my leg slips from under me when standing.

              The EDS body can be complicated. You need someone who will literally go on the journey with you. Don’t give up. It’s been eight years since I was diagnosed, and I have “given up” several times, but I’m starting to understand what I need to do to be the best I’m able to be, health-wise. It’s a difficult journey, especially when you realize some things will remain as they are, and some things can be better only by doing the things you have to do everyday. Im preaching to the choir… I’m just tired myself, too. Hugs.

            2. Thank you so much for responding to me…and I completely get your frustrations with the Charlotte medical community and Charlotte as as whole as I am right there with you at this point…its not the easiest city to have anything that makes you the slightest bit different or that makes you not have the forever FOMO and YOLO mentality of life. Dating is quite the challenge as well! I would love to meet you guys! Please add me on Facebook Molly Rae.

  4. Hi Stephanie,

    Thank you for your wonderful remarks. Thank you as well for inviting me to be your FB buddy. I found you and sent you a friend request. It will be great to get to know you better and to have a pal who understands EDS firsthand (even though I wish you didn’t have it). 🙂

    I liked your comment about how you think about people who have faced tough times to make you feel stronger. I do the very same thing! I still get down in the dumps sometimes, but I always try to imagine someone in a tougher spot than I’m in and then I feel that since people have gotten through more difficult times, then I can get through this. I think things like ‘Geez, most people in the world don’t even have access to clean drinking water, I can certainly deal with this!’ Maybe it’s wrong, but sometimes I even watch depressing documentaries to make myself feel better. 😉

    You are so right about people being stronger than they realize. Until I was diagnosed recently, I thought that much of my pain and many of my symptoms were things that everybody experienced. I mean, I realized that I was wayyyyyy more flexible than most and I was aware of and concerned about my other major symptoms, but for the most part I thought that I was just like everyone else and I couldn’t understand why I tired so easily, why I was so clumsy, and so on. So I (as I am sure you were) was dealing with all of these issues that were “normal” to me and not to everyone else, but I didn’t even realize it. EDS s the new normal, ha ha!

    I am generally a very hardworking, driven, and ambitious person, so it is challenging for me when I can’t get done what I think I need to get done, but I try to stay optimistic as much as I can and to pace myself, of course.

    Please do keep up your wonderful writing as your symptoms permit, Stephanie! Your words are so inspirational, engaging, and personal. You shine like a beacon in the dark of my little EDS world. And my dear, you are ALREADY a fantastic writer, so you don’t have to wait to become one! 😉

    I will definitely share the Spoon Theory with some friends and family via email today, thank you for the recommendation. It can be difficult to explain EDS and dysautonomia to people, and I am the kind of person who likes to act like I am perfectly fine and tries to fit in, even though that makes things harder for me. I guess I’m still under the impression that people won’t want to hang out with me as often if they think of me as sickly or disabled. This is something for me to work through, for sure.

    I am so happy that we’ve connected Stephanie and I look forward to getting to know each other better.

    Thanks again for everything, and have a great day! ❤

    1. I’m so happy we connected also, Linda. You are too kind about my want to be a great writer, but I’ll take your compliment with grace. Obviously, you are intelligent, insightful, and a very good writer yourself. You’re clear, organized, personal, and inspiring. Have you thought of sharing your own journey?

      It’s interesting what you said about being driven and ambitious. I’ve always been the same way, so I know. I know what you’re trying to say and battling, I think. It is so difficult, even infuriating I’d dare say at times when I can’t find the energy to do what I want to or think I “should do.” 😉

      I will see you on FB! Until next time, and thank you for reaching out to me. ❤ ~Stephanie

      1. Aw, thank you SO much for the nice compliments Stephanie! You are very sweet.

        I do enjoy writing, but I sometimes struggle with words so I try to stick to visual creative outlets like photography.

        Speaking of photography, I have noticed several in your wonderful posts things so far that we have in common (besides EDS and dysautonomia, ha ha!).

        We both enjoy photography, I also get my cardio riding my bicycle on a trainer at home for an hour at a time, my skin isn’t stretchy either, and I have cervical spine disease, which is such a pain in the neck!

        So glad to be in touch, stay strong my dear! XO, Linda Sue

        1. I’m glad you like my photos! My camera has been on the fritz. ;'( One os it’s sensors is off (I think the 16F wind on a bridge recently), and I’m grumped about it. 😉

          I hope I can get it fixed or research a new one. I say I’m a photography “hobbyist,” because 1. I can’t stop taking photos and 2. I’m not sure what I’m doing even though I can’t stop. I keep saying I’ll take a class or read a book to better understand the amazing things I can do with SLR.

          You may just be my twin! Hmmm…I wish you lived closer. When you cone to Portland, message me and let’s have coffee or somewhat. 😀

          1. Hi Stephanie! Sheesh, I hope you can get your camera fixed soon. Your photos are so fantastic and I hope you’re able to start making more of them asap. I’ve really been loving the SLR (that I got in June), too. I am definitely a hobbyist as well, and I am looking forward to learning as much as I can about taking good pictures. I read my camera manual a couple of times but I am going to read it yet again as there are so many little things to remember. I am also currently reading a great book that I recommend called Creative 52, where the author takes you through 52 photography assignments, 1 per week (or at your own pace) for a year. I’m only on the 4th week but my snaps are already improving and it is a lot of fun to learn different techniques as well as new ways of looking at your subject.

            I wish we lived closer, too. I would love to take meet up with you for coffee sometime to chat, relax, and enjoy some good conversation. I will definitely let you know when I make my way up north to Portland. Who knows, I may even live there too someday! San Francisco is becoming so gentrified and expensive that it has been slowly losing it’s appeal for me. Portland is one of about 5 potential destinations that my husband Keith and I have talked about moving to. It sounds fantastic! 🙂

  5. Thank you SO much for sharing your story! I was in tears as I read it as I was also diagnosed with EDS III (Hypermobility Type) in 2013 after many, many years of troubling and often debilitating symptoms. Like you, I “looked fine” to everybody, and my doctors misdiagnosed what was going on with me for decades until I finally saw a great geneticist at UCSF who confirmed my own suspicions that I had EDS. I had to actually do a ton of research of my widely varying symptoms online, trying to put the puzzle together myself, before I “discovered” EDS when trying to find out why I was resistant to novocaine at the dentist (Not fun! Apparently people like us with EDS III are resistant to local anesthesia). My geneticist told me that I did not have the vascular type of EDS as I had suspected, but that I had EDS Hypermobility Type along with POTS (which is what he claims causes my dizziness, shortness of breath, and palpitations), which is common for people with EDS III. I am really excited to have found your wonderful blog and look forward to your future posts. Hang in there, dear! I know EDS is no fun!

    1. Hi!

      I am so happy you are getting support from the blog and to get this kind of feedback. 🙂 It is exactly why I started doing this. When I was first diagnosed, I felt really lost…I read technical papers and the few blogs I’d found trying to figure out what it all meant. So, I decided to do my own. There are actually a few blogs out there varying in how they present topics. Mine tend to be personal while trying to relate back to others at the same time. Your comment is inspiring me to go ahead and compile what I have on existing blogs I’ve found.

      We all need support and to know we’re not alone in our experiences. I’ve heard too many times in comments and reading other blogs about our situation with how long it took to get diagnosed. The best cure I know of is to educate in a way I know how. I love writing, so I figured this would hopefully help others and be therapeutic. If you have a blog also, I’ll make sure to add it to my list. I don’t get a lot of traffic, but the people that are reading and subscribing seem to be getting something from it…that’s all that matters. Plus, it’s therapeutic for me.

      Thanks again for the encouraging and kind words. I’ll keep going and am open to suggestions for topics. I enjoy researching especially if it helps someone. It’s really nice to meet you, and thank you for stopping by and taking the time to share your story. I have POTS as well, but it is mild. My blood pressure dropping is more of a problem for me with my pulse hitting 130s max (that I know of!) 😉 on a “bad day.” I have heard from people who hit much higher and faint and hope you don’t deal with this. We are all on a spectrum. 🙂 Please keep in touch and feel free to message or leave a comment if you want to see a specific topic. ~ Stephanie :hugs:

      1. Hi Stephanie!

        Thank you so much for your lovely response to my comment. 🙂 I really, really love your blog! You are a wonderful writer and your EDS expertise is so informative and refreshing.

        I also got a huge kick (and some teary eyes) out of your great recommendation, The Spoon Theory. Thank you for sharing that with your readers. It is such a perfect metaphor for how it feels to deal with a chronic illness.

        As I read through your posts I get so many “A-ha!” moments when you write about how similar that the issues that you are and have been dealing with are to mine. Your symptoms and your need to be a medical self-advocate in order to confirm diagnoses and treat symptoms closely reflect my own situation. Also the fear, depression, pain, and uncertainty that comes from living with EDS Hypermobility Type.

        We do our best to hang in there, right? It can be so hard when people can’t see that it is difficult for us to even sit upright, as this causes so much muscle tension due to the lack of proper support from ligaments. To look at me, no one would guess that there was anything wrong. I have adapted so much over the years, and I hide my issues as well as I can. It’s “funny” but there are scores of EDS-related symptoms that I’ve had all of my life that I always thought were just normal, and that that was just how everyone felt. Some examples are my chronic shortness of breath, resistance to local anesthetics, dysmenorrhea, brain fog, etc. It has been a truly revelatory experience to learn more about my EDS (something that I didn’t even know existed before my diagnosis) since I was diagnosed in 2013.

        Your fantastic blog is going to be a pillar of support and a mainstay for me from now on. I can’t wait to catch up on all of your previous posts. 🙂

        If you are ever in San Francisco please contact me. I would love to meet you and take you out to lunch or something.

        Thanks again Stephanie!

        XO, Linda

        1. Hi Linda,

          Wow…I am so happy that this is the response you had to the blog. Those “ah-ha” moments, NEVER feeling alone or like you are doing something wrong when you have a bad day and get emotional however that may look (understandably!), are part of coming to accept this life.

          Yes, we got dealt a bit of a rough hand. Something that helps me and sounds cliche (sorry!), is thinking of people I’ve encountered who deal with circumstances I don’t know if I could deal with.

          Maybe, all people are stronger than they realize. You never know what you’re capable of living through or the potential to be happy even under circumstances that get overwhelming until it happens. I still get mad. I still cry some nights that it’s “unfair” even though I know “fairness” has nothing to do with it. I still get depressed.

          However, I think we experience all of these emotions, and what is important are the tiny steps we take forward towards living a better life for ourselves.

          You’re not alone, and it seems we do have a similar journey. Thanks for the compliments, by the way. If the opportunity presents itself…if I have the energy…I do want to be a writer. It may not happen, but I’ll just keep at it. So, your words, one woman’s opinion, are precious to me (as cheesy as that sounds!). Well…it’s true though.

          Please feel free to find me on Facebook. I will be in CA at least once a year! I have a brother-in-law and an Uncle, Aunt, and cousins living there that I adore. I want to go visit them. I think one lives in Winters (?) and the other in San Diego. We’d be driving about.

          It’s so nice to meet you! Please find me on Facebook if you like under “Stephanie McManus” and feel free to message me. Maybe we can support each other as we have the energy. 😉 I’m the Stephanie wearing that panda hat in Portland if there are a lot of people with my name!

          1. Oh! I just wanted to comment on the fact we were both diagnosed in 2013 (for me, it was April). We’re probably in similar places.

            Also, with the Spoon Theory, I recommend sharing it ” in general” with friends/loved ones who will maybe take it to heart…maybe a group e-mail if you haven’t done that yet when you’re ready/confident to explain the new information in your life. A fair warning that not all will take it to heart (though I hope I’m wrong).

            With close friends, I would just share the story and explain why you are sharing it with them, so they can understand you still love them if you don’t always have spoons left to hang out or even talk. I meant to mention these in my first response…whoops! ❤


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