I am visible. My disease is not.

By Michael Hyatt

I am disabled. I have Ehlers-Danlos Syndrome (EDS), a genetic disorder that keeps me in constant pain every minute of my life. It is an invisible disease. You could look at me, and if you saw past the leg braces I have conveniently hidden under loose fitting jeans, you would see an aging, long haired, failed rock star and not the tired soul who fights everyday just to get out of bed.

People I know wonder why I don’t visit them as often as I did a few years back. I try and tell them, but they always say, “Well you came out last month.” Well, last month, on that particular day, I probably felt OK. Doctors had a hard time figuring out what was wrong with me because of my past. I was an active child that had this talent reminiscent of Harry Houdini I would let local kids tie me up for five dollars, if I couldn’t get out, I owed them. I never lost.

You see, my joints dislocate at the drop of a hat. As a child, I thought it was because I was “double jointed.” When I got older, I was heavy into the rock scene, and was introduced to addiction. I self medicated for years, never feeling any pain. When I eventually got clean, I started to feel, and it hurt. At first I scratched it up to not being on drugs anymore, but the pain was taking over. I was on the verge of medicating myself again. I fell down one day, it was a good thing as I look back on it. I fell and had to go to the emergency room. While I was there, a friendly geneticist overheard me say, “EDS,” in discussing a possible diagnosis. She knew exactly what to do.

While the geneticist confirmed my guess—I had EDS—it was disheartening because there is no cure. I will be in constant, increasing pain until the day I die. I also had to become an addict of sorts. I say that because in the EDS community, we are not addicts, we are physically dependent on pain medications. I hated that. I learned how to deal with the inevitable depression that comes along with EDS and ways to get by.

For those affected by EDS, it’s crucial to tell doctors about it and educate everyone they know about this, so in the future, others will not have the hard times we all went through getting our official diagnosis.

Having Ehlers-Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Michael Hyatt is a writer from North Carolina, and blogs at Limping on a Star. He recently started an EDS awareness campaign.

Dr. Miller has his doctorate in clinical psychology and is an Assistant Professor in the Department of Family Medicine at the University of Colorado Denver School of Medicine where he is the Director of the Office of Integrated Healthcare Research and Policy. His core task is to integrate mental health across all three of the department’s core mission areas: clinical, education, and research. Opinions expressed here are his own and not those of his employer.

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  • http://www.facebook.com/anastacia.felix Anastacia Felix

    thanks for writing about a very unheard of disorder. i spent my entire childhood believing that i was just weak, or clumsy. it was years before i found the reason for every little thing that went wrong with me over the years. the pain is my constant companion, true. but the comfort and peace i get knowing what specifically is wrong with me helps immensely. mentally as well as physically; better able to treat and improve quality of my life as best i can. tons of love, michael. thanks again!

    • http://www.facebook.com/TB2942 Michael Hyatt

      Tons of love back to you as well my friend.

  • Suffersoftly

    I’m glad this disorder is starting to get more recognition. I got so frustrated with being told “it’s all in your head” or “last week you were walking outside but this week you can’t get off the couch? Yeah right!” I’m tired of feeling pain, fatigue and depression so bad that I want to quit. I may not dislocate joints that often or need braces or splints yet, but I can feel the toll this disease is taking on my mind and body. Knowing its only gonna get worse is killing me. Friends and others don’t understand and give up on me because I don’t or can’t do many things anymore. Maybe that’s my depression talking. Either way, it hurts. I’m tired of being looked at as a lazy loser or a faker, just because I don’t look sick… Ugh, sorry for the rant! One day I hope there’s more help, awareness and hope for those of us that endure this disorder!

    • http://www.facebook.com/jennifer.gilchrist.12 Jennifer Gilchrist

      Its not a rant, its reality. I deal with the exact same issues, and many others here do as well. You never have to be afraid to vent, rant, or complain about your eds here. We all understand and can relate. Please feel free to write any time. This is a very difficult disease and we need to stick together. Good luck.

      • http://www.facebook.com/TB2942 Michael Hyatt

        Yes we do, thank you

    • http://www.facebook.com/TB2942 Michael Hyatt

      I am shouting as loud as I can, join the chorus and let us all sing a symphony of our pain

    • Stacey Kiefer

      I understand your depression and anger. I feel it too. Thank you for posting.

  • zebrah

    Thank you so much for writing about something that really plagues so many, but is such a “mystery” to most! It is so good to know that more and more people are hearing the word about EDS… No matter how it gets to them! :)

    • http://www.facebook.com/TB2942 Michael Hyatt

      Thank you, spread the word because that is exactly what I plan on doing.

  • http://www.facebook.com/roel.chico Roel Chico

    this disorder is is considered a disability? I have vascular and possible type 3 just diagnosed also with myotonic muscular dystrophy,lupus, epilepsy and angieoedema. I am wondering about the possibility of disability ? Does anyone know?

    • http://www.facebook.com/profile.php?id=693187061 Donna Leonard

      where i live i do have a disability cheque each month but it took me 3 years to get it i have type 3 my self and possibly type 4 (i have stretchy skin) as well and have trouble with my teeth not freezing well when i go to the dentist they think i am lying to them cause it should work but it doesnt work that well

      • http://www.facebook.com/profile.php?id=693187061 Donna Leonard

        i also have trouble with my jaw popping out of joint if i yawn to hard

        • http://www.facebook.com/TB2942 Michael Hyatt

          i WAS ON DISABILITY AT FIRST FOR THE MENTAL ASPECTS, IT IS EASIER TO GET YOUR DISABILITY WITH A MENTAL CONDITION, ALTHOUGH YOU WILL BE LABELED FOR LIFE. oops sorry for caps lock

      • Andi S

        Ask them to try a different anesthetic — lidocaine insensitivity is really common (and under-diagnosed) among people with EDS. I have found that a combination of benzocaine gel and septocaine actually numbs me for dental work, whereas lidocaine is like injecting me with water.

  • Mel

    We all need to start talking about this and the effects it has on us, the clumsiness, the migraines, the fatique, the stomach and bladder problems, the dental and joint problems. Thank you

    • http://www.facebook.com/TB2942 Michael Hyatt

      Scream it from the rooftops.

  • Angelika

    Seeing this here is like a ray of hope for all of us invisibly disabled. Though EDS is only one of the many painful conditions that are invisible, it’s vital that doctors listen to what their patients are telling them, even if it seems “impossible” (how many times have I heard that word!).

    When we report our pain, in detail, over and over, it’s incredibly hurtful and demeaning to be told we are imagining it, making it up, or faking it. Our most desperate entreaties for pain relief are seen as “drug seeking behavior” and then we assumed to be just addicts looking for a fix.

    Yes, we are looking for a fix – for our very real pain!

    • http://www.facebook.com/TB2942 Michael Hyatt

      It hurts, it is REAL pain. I am trying my hardest to show the world, to make our voices heard. Stay as strong as you can.

  • Amy J

    Great article, very touching. Good on you for spreading awareness :)

    • http://www.facebook.com/TB2942 Michael Hyatt

      Thanks Aims. :)

  • http://www.facebook.com/TB2942 Michael Hyatt

    Thank you for all the shares and comments. Truly humbling

  • http://www.facebook.com/profile.php?id=693187061 Donna Leonard

    I also have EDS i know what you are saying i am in pain most days now as well
    when i was younger i could do any thing weird with my joints and it was funny but not now i have leg braces, and hand braces to keep my thumb joints in place some days is worse than others and as for pain medication i have tried it all and wouldnt you know it the one thing that helps my dam Dr wont sign for frick sakes although he knows i use it he wont make it legal for me to use and he has aske me if it works i say yes it is the difference between night and day

    • http://www.facebook.com/TB2942 Michael Hyatt

      Wish I were in a state that could even make it legal. I know…

  • http://www.facebook.com/hashley1 Heather D. Ashley

    Great article. I am only 21 years old and I already live with so much pain, it does get depressing to think that this will be my life forever, but it definitely helps to hear about others and connect with the EDS community. Sometimes we think we are alone in our suffering, but in truth we are not, and although I wouldn’t wish this disease on my worst enemy, I am glad that there are others out there who understand exactly how I feel.

    • http://www.facebook.com/TB2942 Michael Hyatt

      That is why I “Hang out” at Inspire.com , a great community there for EDS’rs. Stay as strong as you can.

  • http://www.facebook.com/shinyheatherlee ShinyHeatherlee Moudry

    I could have written this myself it is so close to my own experience with EDS. Myself and both of my children are afflicted with this, and I can relate to nearly everything you experienced with this. The pain, the self medicating, the invisibility. Thank You for letting so many people in.

    • http://www.facebook.com/TB2942 Michael Hyatt

      I will bare my soul if it gets us a cure. Thank you. Stay as strong as you can.

  • http://www.facebook.com/isaac.kirkman Isaac Kirkman

    Well articulated. As a person with EDS my life
    got better (if not the pain) the further away I got from the meds and the doctors.

    • http://www.facebook.com/TB2942 Michael Hyatt

      As I mention above, there is one thing that would help me do that, but forces are aligned against it. Stay as strong as you can.

      • http://www.facebook.com/isaac.kirkman Isaac Kirkman

        It should be legal. It’s works..it’s not addictive. It’s BS.

  • http://www.facebook.com/amy.h.sanders.1 Amy Horace Sanders

    As everyone has said I could not have said it better. I am a single mother of two and everyday I hurt. Sometimes to the point of just wanting to run away from it all the only problem with that is you cannot run away from yourself. We are community of ppl who look fine but, if you pushed us we would topple on some days. Thank you so much for your insight.

    • http://www.facebook.com/TB2942 Michael Hyatt

      You are very welcome. I will try my hardest to bring this out of the shadows. Stay as strong as you can.

  • Jayster79

    Eds is a cruel wicked disease (genetic condition) whatever you want to call it.. I have spent my entire life being told im lazy and that i cant be bothered.. iv had pretty much every painkiller under the sun and nothing works however i have found that cannabis helps hugely.. now if that makes me sound like a junky let me say this.. its better that than the legal heroine that the doctors prescribe!! oh i have kyphoscholiosis form eds btw formerly type 5.. yes my spine looks like a curly wurly my joints all pop and click.. my kneecaps slide around to the side of my knees, i cant sit in 1 place for long as it becomes agonisingly painful and yet despite all of this and much much more i am still treated with disregard by familly and doctors alike who all believe im faking it.. seriously how do you fake a spine that bends forward at a right angle??

    • http://www.facebook.com/profile.php?id=693640142 Traci Smith

      It helps me too.

      • http://www.facebook.com/TB2942 Michael Hyatt

        Yup

    • http://www.facebook.com/TB2942 Michael Hyatt

      I have told that to my doctor, now I have to take a drug test every month. Thats what ya get I guess. It lowers my anxiety and pain, it could knock off 2 pills I take right there. Stay as strong as you can.

      • Andi S

        It sucks that they’re punishing you for being honest. Too bad you’re not in a medical marijuana state (and I’m saying this as someone who was a straight-edge metalhead for many years and who has never chosen to smoke pot or use any kind of recreational drug — but if I knew it would help me, I would want to have access to it!)

  • puppygurl21

    Such a great article! It is hard living with EDS and because it’s invisible it makes it even worse. Hopefully one day people will understand that just because you look fine does not mean that you are! Thank you for helping raise awareness for EDS, I look forward to the day when people will actually know what it is! :)

    • http://www.facebook.com/TB2942 Michael Hyatt

      That is my goal brother in pain. Stay as strong as you can.

  • http://www.facebook.com/mischel.satunas Mischel Satunas

    I was 49 when I was diagnosed Jan.12th 2011 with Ehlers Danlos Type 3. I had long suspected that I had it after researching my symptoms for over a year. At first my doctor laughed and told me I was mistaken. I insisted that he take a closer look and shared with him my research and heart valve surgeries , hypermobile joints, low BP, digestive issues, soft velvety skin, flat feet, pronated ankles, droopy eye lids, the fact that I scar easily. I saw a genetic specialist who confirmed my diagnosis! I recently had my THIRD OPEN HEART VALVE surgery! It is a MIRACLE that I survived! I Praise God that my life was spared and that I am here with the people that I love!

    I struggle with sensitivity to strong smells, bight light and loud sounds! I wake with rib, neck back and joint pain. I have pain of some kind, most of the time. I also have Reynaud’s !
    I have low BP and have to take steroids daily to keep my BP up. I am tired because I struggle with getting enough sleep. I have hip and ankle popping and cracking every day. I get muscle spasms which can be painful at times. I worry about what it will be like as I get older. There are

    I am grateful for the support I find from fellow EDS patients! :) I continue to PRAY for more awareness and research and A CURE! May God bless us and keep us and give us Strength.

    • http://www.facebook.com/TB2942 Michael Hyatt

      I am trying my hardest to raise awareness. I am starting my simple campaign and hope it blossoms. We NEED help, and since I have nothing to do but write, I am gonna write my fingers off. Stay as strong as you can.

  • http://www.facebook.com/sarahjill.rush Sarah-Jill Rush

    Thank-you so much for getting this out here =) I’m 19 and have EDS (and other stuff too of course, haha), and I’m sick of being sick – and especially sick of people not believing me. I don’t talk about it much, especially since I’m still officially dx as HMS for now (waiting on the “official” EDS stamp that takes forever, ugh), but I’m trying to come out a bit more about it. Thanks!! =)

    • http://www.facebook.com/TB2942 Michael Hyatt

      Join us over at inspire.com we have a EDS group and it is great to TALK to people who you don’t have to explain it all to. Stay as strong as you can.

  • Vic

    I have a different hidden disease: severe celiac disease, plus other allergies and digestive damage caused by ten and more years of misdiagnosis and mistreatment. Imagine having the worst stomach flu ever, with vomiting and diarrhea — every day of your life. Of course if I don’t eat and subsist entirely on sugar (why do I have incipient diabetes?) then I look fine and people can yell at me for being lazy, rude because I won’t eat their food, fat, greedy even if I’m not eating, picky, lazy again . . . my message here is that there are seceral hidden diseases and we need to be less quick to judge.

    • http://www.facebook.com/TB2942 Michael Hyatt

      Message loud and clear. All my hopes for you

  • ben007m

    Michael, thank you for telling us your story! It takes great courage to speak up about our health, and you do a magnificent job in the article above. I also believe that you highlight a very important aspect of health that we in healthcare often forget; the emotional side of our health. We know that in order for us to be truly healthy, we must address all aspects of our health including our mind and our body. Having friends and providers not “see” what’s wrong can be emotionally draining and at times quite frustrating; they may not know some of the challenges (and successes) you face. Hopefully this article and the sharing of more stories like this can draw more attention to EDS and help others understand the “whole” you. Thank you and thank you.

    • http://www.facebook.com/TB2942 Michael Hyatt

      QUALITY of life is most important to me. I know at the rate research is/isn’t going, I HAVE to have quality of life over all else. Yeah those pain pills may harm my liver, but let me use them until I have that bridge to cross. Thank you

  • creakysusan

    Thanks, Michael, for telling your story and I couldn’t agree more about telling doctors about it. I have hypermobility EDS and many a doc scoffed about this diagnosis when they did not see before them the circus act picture of EDS that they had seen in med school for barely a nanosecond. I learned that this dismissive reaction was really a cover for lack of knowledge. If we patients assume an educator role with our doctors, we will see doctors discover with careful examination that we do bend far more than the norm and over time we develop severe pain even as we may look relatively normal. Also, as EDS is a disorder of collagen all body organs can be affected and all medical specialists need to expand upon their scant knowledge. This is not a disorder anyone can fake! There are very clear diagnostic criteria should any doc take the time to examine. One study in Europe, I believe, found that it took 20 specialist visits for the average EDS patient to be diagnosed — longer than for a host of other rare disorders to which it was being compared. We can improve upon that!

    • http://www.facebook.com/TB2942 Michael Hyatt

      I grew up in Europe, as a military BRAT, I tent to hold some of their views when healthcare is involved.

  • http://twitter.com/RichmondDoc Mark Ryan

    As a primary care physician, I empathize deeply with the author of this post. In family medicine, we often are the point of first contact for people with undefined illnesses, and we share the challenge of attempting to evaluate and diagnose problems for which there is little/no outward evidence.

    This requires us to be thoughtful, patient and persistence…and to listen to what people tell us, to take them seriously, and to help determine the best way to evaluate a given concern.

    We owe this to our patients, and we need a system that allows for this. We need to make sure that patients and physicians have the time they need to TALK and to LISTEN and to SHARE in the process of developing a diagnostic approach.

    • Elvira

      Mark,
      I wish you were around when my daughter was accused of being addicted to pain killers. She was 16 at the time. 17 now. I was accused of enabling her. She has suffered tremendously and they didn’t help her. Doctors need to be schooled to listen to patients and be more compassionate to their needs.

      • http://www.facebook.com/lexies3 Lexie Perryman Smith

        The system needs to change so that doctors are allowed to be doctors again. I feel like my insurance company that has never laid eyes on me, calls the shots for my care, even to limiting the time my doctor chooses to spend with me.

        • http://www.facebook.com/TB2942 Michael Hyatt

          With what they get “paid” from Medicare/Medicaid, the county health system is what I am forced to endure. It is a factory.

          • Elvira

            It is a shame is what it is. Our health care system is on it’s head. Lexie, you are correct, the insurance companies with their millions run this country and our health care system. But even then, the doctors should still believe in the oath they took to do no harm. They need education on many levels. Just because you have a degree it does not make you a genius. Bedside manner would be a place to start. Listening to the patient is key. If only one doctor had actually listened to my daughter’s symptoms it might have made such a difference in how she perceives her medical care now. They have literally turned her against the very system put in place to help people.

      • http://www.facebook.com/TB2942 Michael Hyatt

        Accused and put in the loony bin from withdrawal here. It is Draconian

        • http://twitter.com/fallswithsplat susan carnes

          Spent many weeks there as a ‘somatic malinger’.

    • http://www.facebook.com/TB2942 Michael Hyatt

      Doctor Ryan, please do more than sympathize, act. You are in a position that can make a difference. Write a medical paper, help me get the word out anything. There are so many of us suffering and being accused of doctor shopping, and we need real help. I appreciate your time to comment, I would appreciate it more if you would help us. THANK you for commenting.

    • Andi S

      Mark — I wish there were more doctors like you. My daughter and I (we both have EDS) have struggled so hard to get appropriate treatment for our issues.

      I was told repeatedly by doctors when I was younger (through my late 20′s) that I should “quit complaining” and I obviously “couldn’t feel anything” because they’d given me a “double dose of lidocaine” for various local-anesthetic surgeries. I was told that I had a “low pain threshold.”

      Turns out I’m lidocaine-insensitive, which is an EDS trait — so, my “low pain threshold” actually turned out to be, as another doctor described, “hardcore” — because I’d had all those surgical procedures without ANY numbing or pain relief.

      I wish that just one of those doctors had said “Hmm, if you’re still feeling everything with the lidocaine and can DESCRIBE WHAT I’M DOING TO YOU WITH YOUR EYES CLOSED, maybe the anesthetic isn’t working and we should try something else.”

      Turns out that we can use some other members of the -caine family just fine — Marcaine, Carbocaine, etc. Now that we know this, we always tell doctors in advance — but I almost had to physically remove the hand of a doctor who was about to do a thyroid biopsy on my daughter and who claimed that there was no such thing as lidocaine insensitivity, because he was holding a great big needle up to her neck, and there was no way I was going to let him do that with no pain relief.

      Doctors who listen, and doctors who are educated about EDS, are worth more than rubies. I very much hope that you are willing to talk to your colleagues about being more open to patients describing unusual symptoms.

    • Amtraut

      This is true, but how do can we find ones like you that actually want to take the time to listen and out what us wrong with us? I ordered and paid for my own blood tests/screening thru Private MD and sent my results to my GYNO and fam doc..it has been 4 days since I sent them and I stil have yet to hear a word and all I asked was for a simple call..

  • http://www.facebook.com/robinlevine3 Robin Levine

    Story of my life… 31 with 2 kids and no health insurance. Working a part time job i love that in the end causes more pain. Im classic/hypermobile and struggle to get through every day without breaking down. I have had heart problems, raynauds, dental problems and every bump or scratch on a normal person is a huge bruise or permanent scar. Every move i make sounds like bubble wrap being stepped on but according to social security… Im fine. My doctor bills are in the thousands and my life is a juggling act. According to the system, im a drug seeker but all i seek is a day where i can take a deep breathe and find peace. Something must change, i dont want a free ride, i wish i could work full time, provide for my family and at the end of the day have the strength to play with my kids. the holidays are here, bill collectors calling and like always i will find a way…,

    • http://www.facebook.com/TB2942 Michael Hyatt

      I go in with long, tangled hair, tattoos and no teeth. Lost the teeth a while back and medicare only buys dentures every 10 years. Due for a new set next year but it is impossible to find a dentist that will take medicare/medicaid. Stay as strong as you can.

  • http://www.facebook.com/lexies3 Lexie Perryman Smith

    Thank you for speaking for all of us who watch the world pass us by while we suffer silently. This is not the life I expected to be living at 49 years old.

    • http://www.facebook.com/TB2942 Michael Hyatt

      Nor I as a 42 year old. Keep as strong as you can

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  • http://www.facebook.com/TB2942 Michael Hyatt

    Thank you to EVERYONE . I am so happy that this has gotten the recognition it has, awareness it NEEDS it. To the doctors who have commented, thank you for your comments but you are also in a position to DO something. Either raise awarness in your community, help my awareness campaign, anything helps.

    To those who don’t know where to go, I have found great friends and support at inspire.com They have groups for all rare and not so rare conditions. They are filled with great people who are filled with support for you. The biggest reason I wrote this, is because of the people there. You can find information and emotional at Inspire that is worth more than I can imagine.

    So get the word out and let us all come out of the darkness to show the world our invisible suffering. THANK YOU all.

  • http://www.facebook.com/profile.php?id=693640142 Traci Smith

    It’s like I was reading my own story with the exception of the rock star thing.

    • http://www.facebook.com/TB2942 Michael Hyatt

      FAILED rock star lol

  • http://www.facebook.com/elizabethr.ouellette Elizabeth Ouellette

    Just like everyone else the article perfectly describes our live struggle with EDS. I am a 36 year old single mom of 3 boys. My life is very crazy. I struggle just to get out of bed, but when I hear my boys in the morning it gives me strength to pull myself out of bed and do my best. I know that it is really sh&%y to have EDS, but sometimes you have to follow the yellow brick road to find the light at the end of the road.

    • http://www.facebook.com/TB2942 Michael Hyatt

      Glad you have those 3 boys, life can be a struggle with EDS but with motivation like that it seems kinda worth it in a way. :)

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  • Flexy

    I used to be married to a cop. Your story reminded me of how he loved showing his friends how I could always escape from handcuffs!

    • http://www.facebook.com/TB2942 Michael Hyatt

      Yep, can get out of those as well haha

  • http://www.facebook.com/TB2942 Michael Hyatt

    Just had an offer to go on TV and talk about EDS. Gonna do it but ANXIETY OVERLOAD!

    • Elvira

      Tell us when. It needs to be done. Stay strong and know there are many behind you. Best of luck.

      • http://www.facebook.com/TB2942 Michael Hyatt

        Oh I will share the time. I meet with the reporter tomorrow and we will see where it goes from there. Getting my notes together and trying to remain calm. :)

  • PattyLynn

    Hi Michael:

    My sister is suffering immensely with EDS and I really don’t know what to say to her sometimes or how to help her. The best thing I think I can do to help her (and all of you) and support her is to somehow get involved. I live in PA and she lives in NC. I would love to do some type of fundraising, I just don’t know how to start. Please let me know what I can do to help! :)

    Thanks,

    Patty

  • http://twitter.com/fallswithsplat susan carnes

    I spent the day limping through the hospital yesterday. The first employee to see me wanted to make sure I hadn’t hurt myself in their parking garage. I made it to the end of the skywalk, and stood in the doorway wanting to ask someone to take me to Ortho. in one of the wheelchairs, but I didn’t want them looking me up and down–you’ve all seen the expression. The next person tells me to ‘cheer up’, and by then I’m so tired I just want to slap them, but I know I wouldn’t be able to use my one good hand for the next week if I did. I was pretty snippy by the time I’d sat in the waiting room for over 3 hours, because the doctor was ‘running behind’–my brain telling me leave, stay, leave, stay…and finally, “There’s really nothing we can do for your useless, numb hand.” Yeah I know, but at least I enjoyed that EMG-it was a real zinger; my arm is still buzzing, and will be for the next week. I should have been less selfish and visited my elderly parents instead. Afterall, it’s not often I’m showered, hair looks halfway decent, wearing my ‘out in public’ clothes, good reason to twist off that gas cap all on the same day.

    • http://limpingonastar.com/ Michael Hyatt

      I know that all to well. I had to go to an appointment then needed to pick up some craft stuff. I was also going to get a haircut. Well got through the first 2 but I told my brother who was driving I was too tired to go in a place to sit down and do nothing, so the haircut was put off a day. Emergency rooms were my go to, but I am at a “decent” clinic and haven’t had run out of meds in a while.9. That was the only reason I went there to begin with, the meds they gave me were too weak and I would run out. Now I separate meds in a pill calender and TRY to make it, but it is hard. I live right on the edge. Stay as strong as you can

  • http://twitter.com/DrBeckerSchutte Ann Becker-Schutte

    Michael,

    Thanks so much for sharing your story. You mentioned the emotional cost of an invisible illness. I think that we often underestimate the toll that chronic health conditions–especially those that are discounted by others–take on our mental health. I hope you are getting wonderful support, and I applaud your honesty and commitment to speaking out.

    Warmly,
    Ann

    • http://limpingonastar.com/ Michael Hyatt

      I applied for disability for severe anxiety to begin with until I realized it was coming from the pain that was slowly increasing. Mental health problems need not be a stigma, there needs to be work there as well in our healthcare. There is not one Mental facility in my county, unless you count the lockup. They all closed due to lack of funding. Thank you for your support, I would love to get this on GMA and I am working on it

  • http://limpingonastar.com/ Michael Hyatt

    It is looking like a small local piece. WHO on a national level should I try? Ellen? GMA? Anderson? I don’t know the major daytime talk-shows One of those would be best because they always play in the doctors offices. Steam getting knocked out of me, but I WILL do this.

  • LuLu

    I shared this on my Facebook. Very, very few people know what I go through on a daily basis. For me to spread awareness about EDS, I am going to have to stop hiding it. Thank you for sharing your story!

  • Stacey Kiefer

    My name is Stacey (Increation on Inspire)
    Thank you so much for this article. I am just beginning this journey with EDS, I have two types which basically just means that I have too my symptoms to figure out which type I actually have without specific testing which I could not obtain. I led a very active, and somewhat destructive life myself, in the beginning. No one in my family had ever heard of EDS, until I developed a cerebrospinal fluid leak (which I still have). I began researching this leak and it led me to EDS. After a thorough family history, I discovered a match. I was diagnosed August, 2012. I have three children, one who has been unofficially diagnosed and two who have not progressed enough, though I believe they also have it. Other family members are now able to get help for their own illness, which until now, they did know was due to EDS. I am finding that because this illness is invisible for the most part, not everyone really understands just how much pain I am in and why I need to wear supportive gloves or other joint stabilizers. I think sometimes, some are embarrassed when we go out in public and people stop and ask me about my gloves. For the most part, I have a very loving and supportive network of family and friends. Please keep writing for us all! Thank you so much.

  • Molly

    I’m not physically dependent on pain medications, but that’s probably only because I use cannabis. Thanks for writing this and I hope your campaign is ultimately successful.

  • Andi S

    I still can’t believe that even though I’d had a positive EDS diagnosis for years, they didn’t think to check my daughter for it (and she didn’t seem to have the excessive joint hypermobility I’d had at her age — her issues manifested differently) until she was 16. There are injuries she could have avoided, and treatments that would have helped improve her life, but EDS is uncommon enough that doctors miss it even when all the signs are right in front of their eyes.

    My ability varies from day to day — on a good day, I’m productive, cheerful, social, and no one can tell I’m sick. On a bad day . . . no one sees me, because I’m stuck in bed, crawling to the bathroom because my spine has shifted and is pressing on a nerve to the point that I can’t walk.

    But those “good days” help lead to the perception that I’m not “really” disabled — and why do I need a wheelchair when I can walk “just fine”? (I can walk just fine — until my hip goes out, or until I start having tachycardia. Then, the wheelchair comes in handy.)

    Thank you for helping make this not-well-known-enough disease more visible!

  • Dan

    Outstandingly well written and echoes some of my own journey with EDS. I am here to shout with the rest of you that “THIS IS REAL!” Thanks for getting this out there Michael!

  • Amtraut

    Too bad it is not as easy to get a doctor at my young age (31) to listen or be concerned at all about anything..I wish I could make myself mad enough when in their office to cry or lose my temper and make them listen but nooo, I just walk away and let them think Im making all my problems up in my head :(

  • Jacqueline

    Yes ! Also, nothing is incurable. Technology will save us! This was posted yesterday on Wall Street Journal! http://online.wsj.com/article/PR-CO-20140113-905169.html